ACTION ALERT! Access to Healthcare - We Need You!

ACTION ALERT!!!! ACCESS TO HEALTHCARE – WE NEED YOU!! There is so much going on with access to healthcare both nationally and locally. We want you to get involved in the Advocacy Committee so that we can take action to stay informed and have a voice in the decisions being made. Here is some of what is happening: Repeal and Replace ‘ObamaCare’– What Does This Mean For All of Us? Here is What We Know: On March 6th the Republicans released a plan on how they will repeal and replace the Affordable Care Act. The key measures include: It replaces federal insurance subsidies with a new form of individual tax credits and grants to states. Under new legislation, Americans would no longer be penalized for not having health insurance. But insurers would be allowed to impose a surcharge of 30% for those who have a gap between health plans` It will keep two of the most popular features of the Affordable Care Act: Forbids insurers to deny coverage or charge more to people with preexisting medical conditions People can stay on their parent’s policy until age 26 Planned Parenthood will be ineligible for Medicaid reimbursements or federal family planning grants The PSI Government Relations Alert regarding pending Affordable Care Act (ACA) repeal legislation has been posted on the PSI website at:  http://www.patientservicesinc.org/News/ArticleID/1135 The debate, starting in House committees this week, is a remarkable moment in government health-care policy making. The Affordable Care Act, former president Barack Obama’s signature domestic policy achievement passed in 2010 with only Democratic support, ushered in the most significant expansion of insurance coverage since the creation of Medicare and Medicaid as part of President Lyndon B. Johnson’s Great Society programs of the mid-1960s.  There is no precedent for Congress to reverse a major program of social benefits once it has taken effect and reached millions of Americans. Regardless of whether you are Republican or Democrat, liberal or conservative, there are provisions in the Affordable Care Act that helped many people with bleeding disorders gain health insurance coverage. This has a significant impact on the lapsed time in getting treatment that can reduce long-term damage and disability. MEDICAID EXPANSION Medicaid would be converted from its current form of entitlement to anyone eligible into a per capita cap on funding to states, depending on how many people they had enrolled. In states that expanded Medicaid under the ACA, which includes Arizona, the government for now would continue paying for virtually the entire cost of the expansion. Starting in 2020, however, the GOP plan would restrict the government’s generous Medicaid payment — 90 percent of the cost of covering people in the expansion group — only to people who were in the program as of then. States would keep getting that amount of federal help for each of those people as long as they remained eligible, with the idea that most people on Medicaid drop off after a few years.  States would receive a set amount of money from the federal government every year, regardless of the number signed up, which could force Arizona to make difficult choices on what they will cover on Medicaid.  It will essentially shift the burden to the state in terms of managing the risk. This is particularly concerning in Arizona because the Medicaid Expansion was passed by the Arizona legislature with the caveat that if at any time the federal government gives less than 80% to fund the expansion, Arizona will back out. Our community should care about Medicaid Expansion because it extended AHCCCS coverage to allow those up to 138% of the federal poverty level to be eligible for AHCCCS. It also extended eligibility to include adults. Many of those who have bleeding disorders are on AHCCCS and this could directly impact many of our members. Concerns for those with Bleeding Disorders: Lifetime Caps are not fully addressed and could be impacted Continuous Care – there is a provision that that the insurers can charge a 30% surcharge if there is a gap in coverage. This could make healthcare unaffordable for our members If Arizona is only given a set amount for AHCCCS, it could negatively impact how much coverage our members can receive. If the federal government covers less than 80% of the Medicaid Expansion, Arizona will back out. This could jeopardize coverage for many adult members currently on AHCCCS as well as those earning between 133% and 138% federal poverty level.  Market Stabilization Rule Additionally there are changes to the Affordable Care Act that will take effect THIS YEAR! Centers for Medicare Medicaid Services has proposed the market stabilization rule that is designed to help stabilize the individual and small group markets on the Healthcare Exchange. This proposed rule would amend standards relating to special enrollment periods, guaranteed availability, and the timing of the annual open enrollment period in the individual market for the 2018 plan year; standards related to network adequacy and essential community providers for qualified health plans; and the rules around actuarial value requirements. Proposed changes will…  •  Shorten enrollment period- from 3 months to 6 weeks  •  Change Special Enrollment- will cause 1-2 month delay in enrollment and may not lower costs to insurance companies.  •  Require patients to pay debt from previous unpaid premium BEFORE same insurer will cover them.     Currently, patients can back-pay while maintaining coverage.  •  Create continuous coverage requirements (in place of individual mandate). If insurance gap is longer than 60 days, penalizes people who are uninsured when they try to get insurance. Penalties can include 90 day waiting period or increased premiums.  •  Lower the number of Essential Community Providers- this will reduce access to health care for low-income, medically underserved communities.  •  Summary from Health Affairs Summary from CMS (Centers for Medicaid and Medicare Services) What Is AHA Doing? AHA responded to the proposed Market Stabilization Rule with a public comment. AHA is meeting locally with the governor’s office and AHCCCS representatives to advise of our concerns with the proposed changes AHA is a member of Cover AZ, a coalition to influence public policy on access to healthcare AHA is hosting it annual Legislative Day where we will discuss the changes with our Arizona legislators AHA has started the Action Alerts to keep you informed as we get the changes. AHA sent 10 teens to NHF Washington Days this week to talk with our federal legislators and raise awareness!!   What Can You Do? Read about the proposed changes to the Affordable Care Act (ACA/Obamacare). Make a Public Comment: Go to http://www.regulations.gov The government is ASKING FOR OUR OPINIONS about how these changes will affect people like us in the bleeding disorders community. Guidance- Be specific about what changes would impact your life or your family. Describe hardships or how you may be disproportionately affected because of a chronic health issue like a bleeding disorder. Below is an example letter. Please do not copy it directly, use it as a guide Join the Advocacy Committee at AHA – Meeting on March 27th at 6pm. Please email cindy@arizonahemophilia.org to RSVP Attend Legislative Day – April 2nd training, April 3 Lunch on the Lawn/Legislative Day. Sign up by email cristina@arizonahemophilia.org Look for our Action Alerts coming out as the healthcare changes unfold and help us create a voice for all of us! Email and call our Senators and Representatives Senators: John McCain and Jeff Flake Representatives:  Tom O’Halleran, Martha McSally, Raul Grijalva, Paul Gosar, David Schweikert, Ruben Gallego, Trent Franks, Krysten Sinema Share Your Story www.protecthealthcare.com Stay Informed Kaiser Family Found ation  http://kff.org/interactive/proposals-to-replace-the-affordable-care-act/ Commonwealth Fund, Georgetown Health Policy Institute, Urban Institute Sample Letter: Since my first son was born 14 years ago, I’ve been a member of the bleeding disorders community. Two of my sons have severe hemophilia and require expensive life-saving medication several times a week to maintain their health. Because I have children with expensive chronic health conditions, I know how important it is to have high-quality, affordable health care. I also volunteer in the bleeding disorders community and have seen that a bleeding disorder like hemophilia can affect a person’s entire life. One bleed can cause permanent damage, chronic pain, disability, and even death. Therefore, I want to make my voice heard regarding the proposed Marketplace Stabilization rules. 1. By shortening the open enrollment time, people who need coverage may not be able to get it. The process for enrollment can be lengthy and for many who are working multiple jobs having a shorter window, especially around the holidays will make application overly cumbersome. 2. A change in the special enrollment rules will create unnecessary waiting for patients and not necessarily lower the cost for insurance companies. Data shows that the extra step of verification for special enrollment is more likely to be done by older people. People with bleeding disorders cannot wait 1-2 months for pre-verification. They need blood-clotting factor several times a week and this wait could cause them significant hardship in the form of bleeding episodes, missed work, and visits to the ER, or even disability or death. 3. Patients should be able to pay their debt to an insurance company while being covered. In AZ there is only one choice for insurance on the marketplace. For example, if someone on this plan with a bleeding disorder lost their job and couldn’t pay premiums then enrolled again and couldn’t pay the debt all at once, they would be denied coverage. This would be a significant hardship: bleeding, ER visits, loss of work, inability to pay premiums, etc. This negative cycle does not help the patient or the health care system. It would disproportionately hurt people like my children with expensive chronic health conditions. 4. Essential Community Providers are important for the bleeding disorder community to access health care. Many of our community are low-income and medically underserved. Insurers are currently able to explain when they can’t meet the number of ECPs in an area. Reducing a small administrative burden for insurance companies would be a huge medical, emotional, and financial burden for rural families with bleeding disorders.

Colburn-Keenan Foundation’s Beth Carew Memorial Scholarship

The application deadline is Wednesday, April 12^th.  Deadline extensions will not be provided.

Who is eligible to apply for the Colburn-Keenan Foundation’s Beth Carew Memorial Scholarship?

Any undergraduate student with hemophilia, von Willebrand disease, or a related inherited bleeding disorder is eligible to apply for the Beth Carew Memorial Scholarship as long as all of the below criteria are also met:

1.    Applicants must be diagnosed with an inherited bleeding disorder. Students who do not have

     an inherited bleeding disorder but whose parent(s) or sibling(s) have an inherited bleeding

     disorder are not eligible to apply, even though they are affected by an inherited bleeding

    disorder.

2. Applicants must have volunteered time and energy to directly benefit the bleeding disorders community. While general volunteerism is undeniably valuable and should be noted, applicants must document volunteer activities specifically within the bleeding disorders community in order to be considered for this scholarship. Regardless of any legitimate barriers to one’s ability to accomplish volunteerism within the bleeding disorders community, applicants should not apply if they cannot fulfill this requirement.
3. Applicants must be entering or attending an accredited 2 year or 4 year undergraduate institution in the United States to obtain their first undergraduate degree. High school seniors, undergraduate freshmen, undergraduate sophomores, and undergraduate juniors may apply. Students who are pursuing or resuming an undergraduate degree later in adulthood may apply even if there was a gap in their academic career.
4. Applicants who are past recipients of the Beth Carew Memorial Scholarship may reapply throughout their undergraduate career.

What are the details of the award?

1.      The number of awards vary and the scholarship amounts range from $3,000-$6,000 annually and are not renewable.

2.      The Colburn Keenan Foundation reserves the right to change the number of awards and the amounts based on the applicant pool and available funding.

3.      The scholarships will be applied to costs associated with obtaining a first undergraduate degree at an accredited, non-profit two or four year college/university in the United States.

4.      Students may transfer from one institution to another and retain the award.

Dakota Hollingsworth, High School Grad!

______________________________________________________

Can you tell us a little bit about your specific bleeding disorder and what it took to get diagnosed? 

I have an Aggregate Platelet Dysfunction, a rare condition caused by a defiency of a protein on the surface of a platelet, but for years, I had been mis-diagnosed as having vWD.  At the age of three, my mom began noticing that something wasn't quite right.  I began bruising severely, had excessive bloody noses, as well as bleeding from the mouth and gums and that was when I was diagnosed with vWD.  Last year, the doctors started to say that they suspected it wasn't vWD and after three tests, it was confirmed.  Last October, I became really sick and was in the hospital for 3 weeks, needing 5 transfusions, and it was then that they finally were able to confirm my disorder.  

Congratulations on graduating from high school!  The attached video is such a great recognition of all you do for the bleeding disorders community!  Can you tell us a little more about the volunteer programs she mentioned in the video?

After coming back from Washington D.C., I really wanted to use my experience as a platform to share with others to raise awareness.  I wanted to be a voice at my school for potentially other kids like me who may be silently suffering.  I wanted to set an example that despite my condition, I can achieve anything that anyone else can.  I organized a school wide Red Tie event and pep rally and spoke at it,  I signed up to run a charity 5K, and also participated in the Zoo Walk.  I volunteered to do registration at two 5Ks. I volunteered the entire day at the Salsa Challenge and brought a team of friends with me to help. I volunteered at my school to help with the floats and to hand out candy.  I volunteered at multiple elementary school events and volunteered at all the homecoming games in the food booths.

Can you tell us about your experiences with Camp HONOR and how it has made an impact on your life?

My experiences have been beyond positive, working with kids has also been something I have enjoyed doing since I began babysitting at 11.  I love all the activities I get to do with them, songs we share, and night time cabin time.  Experiences like this have helped to groom me to be the person that I am today.

Dakota with fellow campers at Camp HONOR 2015

 You have been part of the new Future Leaders program with the AHA, can you tell us a little bit about what it has taught you?

It has definitely taught me not to be ashamed because I may not be like everyone else and to propel me to want to speak and share more with others to educate them on bleeding disorders.  I have found a passion that I didn't know I had to be able to open up and speak to others about my testimony, to educate people, and to potentially reach others like me that may not have found their own voice yet, so that they know, that they are not alone in this.

Dakota and the other Future Leaders in Washington, D.C., for NHF's 2016 Washington Days

What are your plans now that you’re a high school graduate?

Because I missed so much school due to my hospitalization, it was tough to graduate.  Because of this, I missed many deadlines for scholarships and was unable to complete the necessary coursework for a 4 year university, so I am going to be attending a local community college for two years before transferring to New Mexico State to study Forensic Pathology to be a Coroner.

Additionally...

Since moving to Arizona and becoming involved with the AHA I have grown and become more involved than I ever thought possible.  I am so grateful to the Association for allowing me to be a part of all these amazing life experiences, helping me to grow in my own skin and embrace my condition and teach me not to let it defy me. I also would like to say a big thank you to my family for sacrificing all that they have for me.

KidsCare has been Restored!

Governor Doug Ducey signed SB 1457, restoring KidsCare coverage to children in households between 133% and 200% of the Federal Poverty Level (FPL)

KidsCare Coverage Restored Enrollment for KidsCare was frozen in January of 2010 during the budget crisis.  Earlier this month, Governor Doug Ducey signed SB 1457, finally restoring the coverage to children in households between 133% and 200% of the Federal Poverty Limit (FPL).  Families will be able to apply for KidsCare starting July 26, 2016 and coverage for eligible children will begin on September 1, 2016. It is estimated that approximately 30,000 Arizona children will be eligible for coverage under KidsCare.  Parents insuring their children will pay a monthly premium for this coverage, depending on their household income.  Monthly premiums are estimated to be between $10 and $70 depending on how many children are in the household and the income of the family.  To apply for KidsCare, on or after July 26, 2016,  follow this link to Health-e-Arizona Plus: https://www.healthearizonaplus.gov/default/default.aspx Click here to view the official press release

One Mother's Story

Introduction of Self and Family

Want a great bio?! I know, who ever can write their own bio and still feel good about yourself after deserves a metal. I wrote my bio. I read the 3 sentences, then messaged one of my older brother's who is away to the islands for med school, and said simply. “I suck.” He said send me what you have. So I typed the 3 sentences, and he said, “Give me 2 minutes!” And then he sends me this bio that made me just cry. Then, he messages, you are way more than any bio, Paisley. That is where I am, as a parent of a child with Severe Hemophilia. I have become accustomed to this lifestyle. Arguable numb at times (which is a front by the way). It never goes away, it's always there. I don't ever wish he didn't have it. Because I feel defeated by it if I dare speak those words. I don't ever want him to feel defeated, much less by something that makes up apart of who he is. Don't get me wrong, he is also more than a bio, he is more than Hemophilia. He is my son. And he is not defined by his bleeding disorder. He is intelligent, he is an artist, he is a “master builder”, he is silly and serious, he wants to join the service someday. He is My Hero.

Justin's Diagnosis

Justin had a normal pregnancy. He was born at 40+ weeks. His due date was 06/06/06. He waited a week and came on the 13th. So now someday will be celebrating a Friday the 13th birthday! Anyway, he came and we were just beyond excited! Everything was going swimmingly, until I got up to use the restroom. I saw blood on my chest, and quickly realized it was coming from Justin. And that is where our hemophilia story begins. Justin's PKU heal stick was bleeding. The nurses there said I was opening it every time I fed him and told me to be careful how I was holding him. I felt horrible. I can't even hold a baby right?! So they sent us home, telling me not to worry about it but continue to change his band-aids. So there I am not trying to be a over sensitive, naive, first time mother. He continued to bleed. We continued to change the band-aids. The next morning I wake up and panic. He never woke in the night for me to feed him! He was awake but lethargic. I was so scared. Opened his swaddled blanket and there was a lot of blood. I did as the staff from the hospital said, I didn't go to the ER. I went to our assigned eds. I walked right in without a call or appointment. I opened the blanket & the doctor only spoke Spanish! What are the chances right? She started telling me with urgency to go. I could only make out building with many colors. Needs blood. I wrapped him back up and my sister was driving. I didn't put him back in his car seat, I held him. Tighter than I have held anyone.  I had no idea what building we were looking for. But we got on the 51 and drove. Then, there it WAS, THE BUILDING OF MANY COLORS. PCH (Phoenix Children's Hospital)! They rushed us back and did an iv in his head. And this is when I first let out a giggle through my tears. His party hat. I can so vividly remember that hat. They gave him this medicine, and he stopped bleeding. I said, “I want that. I need to know what that is.” The nurse smiled and looked up at me and said, “Oh honey, you're going to get a lot more of this.” Boy was she right!  .........

After all that, we started our adventure that is hemophilia. We are forever grateful for our extended family, our first line of defense, our Team of supporters at the hemophilia Clinic. Some of the scariest words I can remember from one of our first appointments was, “You are going to be his biggest advocate. You will be informing doctors/nurses of hemophilia. At times you may know even more than they do.” What the heck? So empowering, yet at the same time, terrifying. Terrified. What a responsibility to take on, a child with a chronic illness/ disorder. Who am I to handle any of this? I suck. And that's where our extended family comes into play. I have my immediate family. I have Chris' immediate family. We are lucky they are as supportive as they can be. But our clinic family is unbelievable. I realized, very soon after and continually throughout the past 10 years that they have my back. Then, we were embraced by the AHA! Another amazing extended family. And they have been there every step of the way.


I think that's what I appreciate so much about hemophilia & the community it has built. It is undeniably unpredictable. Yet, it remains to be under control, and that's where I feel lucky that he has severe. We are proactively treating him. What a wonderful thing. To also know that I can at anytime get a question answered, a fear calmed, and the support to serve my sons needs. Knowing this helps empower me as Justin's in home care-taker/advocate. That is not always the case in other areas of chronic illness.  Most of my “friends” are now other mother's with children with chronic illness, medically complex kiddos, or still to be determined cases. And believe me when I say that the support my family and son have received has been unparalleled. A lot of these mothers don't have support from their families, or even at times, spouses. So being able to go to the clinic and feel understood helps me to be able to learn, focus, and listen to and head the guidance of  what  the pros can teach me.

Justin's Port Placement

Fast forward a year! It's another transitional time! Port placement. You know they prepare you as much as they can before. Which is all truly awesome but when your first attempt at sticking the fake baby with a needle, you break the needle. It can play some pretty messed up mind tricks. ... Scary handing your child over to have a necessary procedure done. And once he comes out, there is no turning back. Crash course of everything you have studied for is all coming down on you. All the little steps, mixing, washing, and bracing yourself for the real deal. That's where the little nasty affair happens. PIC Line. I was forewarned. Not to fall in love. Oh but I did. I fell hard.  And needless to say, I then grew into the port after about 9 years.... It took My husband and I and our 2 older girls to give his medicine. Chris holding, the girls, blowing bubbles and trying to comfort him. I infused. Then, it all starts becoming life as you know it.  A few years pass, and we are pregnant with our second son. All the preparations of having a child, maybe a boy, with that chance of hemophilia. Then, that's when we learned he was no longer coming as planned. Robert, had Trisomy 13. We delivered him still. Pure heartbreak, and we embraced it for what it was. That is something that having a child with chronic illness kind of prepares you for. Nothing is ever, as planned. Never again really. We slowly started to gather the pieces and get back on the roller coaster of everyday life.

Justin's School Beginnings

Justin didn't do preschool so kinder was our first attempt at breaking out into the big world of normalizing him. It can be a little scary and overwhelming sending your little one to school. But then, you start thinking of how do I explain this in a not so overwhelming way to the teacher and school nurse. Before I could even get nervous about it, we were contacted by the social worker that has helped us each year up until this past year with introductions. What a relief! She had everything printed up and was there to really truly educate the staff. And show support to them for me. Lighten the load. After each year I was able to be more and more comfortable and use her as a model to what I would do the following year. This past year I went it solo. I felt comfortable doing so because not only had I sat in on a couple but because she was only a phone call or text away to help. Once again, having that support to fall back on is so important in all transitions of hemophilia. I was never made to feel as though I should know this by now, or when are you going to start taking this on like a big girl. It was always, are you sure, we don't mind, it's what we're here for!

While Justin was in kindergarten, we were happy to be able to welcome Cruze to the family. Cruze didn't have a smooth as entry to life. The entire pregnancy was nothing but stress.  They saw red flags all over. Heart, GI, kidney's, bladder, 2 vessel umbilical chord with a cyst. And really low fluid throughout. And just other things, it was easily every week I went in, there was something new. We were prepared to not be bringing another son home. But we didn't give up. After much discussion “Suggestion” of terminating him from the doctors, we didn't. The fluid that was surrounding his organs including his heart was of concern. But even more so is if Cruze were to be born with hemophilia. Once again, the support our family received from the clinic was amazing. They helped me advocate for Cruze's life and with his best in mind. Thanks to them I would be delivering at a hospital more fitted for our families needs. And it paid off greatly. Cruze was tested immediately and did not have hemophilia. But his slew of other medical issues that came to surface in time were relevant. I didn't have to be separated from him the way we would have been otherwise. Cruze is in stage 3 kidney failure, and progressing. His GI issues are still under surveillance. He actually goes in for his EKG tomorrow and shortly after an ECHO because his kidney disease has now caused high blood pressure which we have started treating. In his short life he has had multiple procedures, fixing his kidney reflux being one. One procedure where he actually stopped breathing under anesthesia, that's pretty scary. He has had all sorts of therapies and still continues therapies to help him today in his developmental preschool. He is vibrant and looks up to Justin in every way. As we are still figuring Cruze out, we are just trying to do whatever we can to help him become self sufficient. I feel truly blessed with all the things that were seen in his ultrasounds. It made it so much easier, rather than trying to convince doctors of what was happening, that we were being pointed in the next direction.

Our youngest daughter, Cali, who is now 2. She was watched closely during pregnancy, just because of history. But she came right on time. Without a hitch. I was able to be at home at 24 hours. She had some food protein allergies, similar to Cruze, but no where as severe. And seems to be developing right on track. She is the only one in the house not taking medicine. I think she feels left out at times.  That's the thing with chronic illness, and the awesomeness of the Hemophilia association and hopekids. She is included in those activities. I think we have always tried, along with the older girls who are now 20 & 17, to not let their brothers' medical stuff drown out their spark as well.

Port Removal

February of last year Justin's port has had it. He had a good run I feel. 8 years! It was time for the big jump. Probably one of the scariest things. That means I was once again in the hot seat to learn something so out of my natural range of being Mom. Time to start finding those veins. And once again our support system was there every step of the way. There were many times I felt like I can't do this. But with the much needed encouragement at the clinic and support through many mini meltdowns from failing to hit a vein the first, second, or third time, we were on the learning curve. They all had so much patience with me. At a point we actually had some help from the therapist there in clinic to help Justin when he was having trouble hitting. Not to mention, Justin was my biggest cheerleader.  I can't count the times Justin would positively encourage me, probably also secretly trying to convince himself at the same time that is was all going to be ok.

Justin’s Camp HONOR

I wasn't in the hot seat for long though. A few short months later Justin was going to be attending his first year at Camp HONOR! Camp Honor is by far one of the greatest upsides to having hemophilia. I know this, because when I asked Justin his favorite part about having Hemophilia this was one of his top 3. Not only is independence bread there, but the normalizing of his life, is at that camp. At camp he learned to administer his own medicine. At the same time, building bonds with his peers. Surrounded in an environment of kids of all ages that face similar obstacles.  What a life changing experience. As I was waiting at the end of the week with no expectations. Just hoping he had a good time and felt independent while away. Realize that was the very first time he had been away from me his whole life for more than a night. When the buses come to a stop the parents are anxiously waiting outside the doors to greet their children. I was one of them. He got off the bus and held up his stick! I knew right then that he had braved the first self poke that week. The pride on his face, filled my heart with gratitude. Something I could not give to him was absolutely provided to him. I then waited to get to the truck to cry tears of gratefulness and happiness, mixed with a little sad that this is his life. He has continued to give his own medicine, for the most part, regularly. He has hard days, when he cries, or he misses and feels the failure and I try and pick up those pieces by helping him. But he was encouraged to take the leap.  And it has been a successful transition so far.

Our family was introduced to the AHA right away. Our family is not anyone who would search out a support group. They reached out to us. I am so thankful they did. Our medical staff is like I said our first line of defense. But the Association is what brings out the positive. Providing the extra support and family opportunities to educate ourselves in the confusing world that is medical. Hemophilia is truly a family ordeal. One is affected, all of us are. The association gets that. The hemophilia community is so important. The relationship we build with  the association staff, our nurses, and drs, and in Justin's case his study nurses is huge. It encourages us to advocate on a bigger level, help bring awareness, it also validates what we know as parents already. Our children & their condition matter. The efforts to make his life easier on all levels does not go unnoticed. Every time we have gone in for a visit in clinic and association, is always educating and uplifting.

HopeKidsAZ

Something about having children with chronic illness and other complex things is attending family functions. Simply going to the movies, going to the grocery store, being a regular at the hospitals is exhausting. It's emotionally and physically draining. Even mentally preparing the night before, not sleeping before or after tests have been done. Waiting for results. It takes a toll. It is hard to not be overcome with emotions at appointments at times. You have to keep it together. That's where survival as a parent or caretaker comes in. Wanting to have a busy schedule of simply sports, karate, music or dance lessons be what is occupying your down time. Not medical hardships. So when a friend of mine that I had met, her child was chronically ill. She mentioned to us that maybe HopeKids would be something we might be interested in. (Hopekids is for children and families that have a chronic illness.) We thought, oh well it's worth a shot right. So after my friend nagging me over and over to send in our application, we were accepted into the HopeKids club. When we as a family can attend an event and not be worried if it is something our kids can attend and participate in, it's so much more relaxed. It's very similar to attending an AHA event. There isn't going to be something there my son won't able to do. It's a hemophilia friendly environment.

Boot Camp

Which leads to my next example of the greatness that is made available to Justin and others.  Justin and I were given an opportunity to attend a “Boot Camp”. This “camp” was held once a week for a couple of weeks. It was after hours in clinic. The boys that all went to camp together were able to revisit that in a more intimate way. While at the same time the parents were given support and information separately on different topics each week. One night I couldn't help but feel something so awesome. Justin had gotten in the truck and as usual we went over what we learned that night.

He said: "Mom, a boy was crying tonight.”

I  didn't know where he was going to go with this so I waited.

“He cried, Mom. He cried just like me. And when he started to cry another boy told him 'it's OK, because I cry at home too.”

Right at that moment it was just what Justin needed. His heart was softened for that boy. He completely understood him. As well as being completely understood himself. At the completion of the Boot Camp they received patches and a banner to showcase their accomplishments on. He proudly has this hung in his room and displays his stick from Camp in the guest bathroom for all guests to see.

These are the experiences that are necessary in order for him to grow. In order for him to be a little braver next time & even try a new vein. In order for him to be independent, he has to be given these opportunities to test his limits, but feel safe enough that he knows his team is there for him to catch him or cheer him on! I know Justin is young, and we haven't been through all the transitions that are yet to come, whatever they may be. I can with confidence know it will be OK. The biggest is behind us, and him independently administering his own medicine & his knowledge of hemophilia, in my eyes as his mother, is the most important. And anything that is waiting in his future in regards to hemophilia, it will be OK. In the past 10 years treatments have come so far. To imagine what he will be apart of in his lifetime is exciting.  With the support team that he has grown to know and that we all love is a very big part of that. Now that we are expecting our last child, who is a boy. It's comforting to know, if he is born with Hemophilia, that we have this community already as a foundation. And at the moment he is born, our hemophilia team is going to be right by our side.