Sammy is a thriving, active, adventurous three year! He also has Severe Hemophilia A. He loves to run, climb, and "super jump" off of everything as most toddler boys do. Running after his two older siblings and attempting to join them in their pursuits is also exciting. Kicking soccer balls and building forts are definite favorites. We love Sammy's tough, determined spirit! Keeping him safe with a severe bleeding disorder is a unique challenge. We are continually thankful for Sammy's amazing care team and the Bleeding Disorder Foundation of WA for providing resources and guidance to allow Sammy to thrive!
Tuesday (Aug 22, 2017) was a huge day for Declan as he had been living with a port for 6 1/2 years and now it was time to come out. With Declan being successful with his self infusions and his inhibitor being gone there were no more reasons to keep his port in. Declan walked out our front door to go to Childrens like it was just like any other day, however it was a day he had been waiting for all summer. As we sat in pre op he was inquisitive on how his port worked and with the help of a Child Life Specialist Declan was able to hold a port in his hands and learn with a diagram how the port functioned. It was an amazing aha moment for him. The surgeon allowed me to accompany Declan into the OR while they prepared him for surgery and I watched Declan walk into the OR and climb up on the operating table by himself. It was time and he was in charge. So awesome! The surgery was successful and he is recovering perfectly. Having the port out for him marks the beginning of a new chapter in living with Hemophilia. Declan plays soccer, basketball and baseball and the threat of an impact to his chest and damaging the port is now gone. The bump that prodded out in his t shirt is no longer there and shows one more way that Declan is like all the other boys-Hemophilia is not a factor. Declan is thriving with hemophilia and living his life to the fullest.
"My first thought was he must be low on iron[so much bruising], I called his Pediatrician and was told to come in for some blood work, ok no big deal... well, it turned out it was a big deal! Steven was diagnosed with ITP."
In the first 2 years of being diagnosed, Steven had been dubbed, 'bubble boy.' Normal platelet counts range anywhere from 250,000-350,000 and he lived within the 10,000 range for quite some time. Steadily his platelets rose on their own and he now lives steadily at 95,000. He still has Chronic ITP but can play certain sports and enjoy being a kid. Steven's favorite sport is basketball but he really wishes he could play football like his brother. Unfortunately the hard contact sports are still a no-go for him.
The BDFW has helped Steven tremendously build confidence and make life long friendships with other kids who have bleeding disorders. He has enjoyed events through Backpacks and Bleeders and Camp I-Vy. Overall, Steven is thriving with his bleeding disorder and rocking life!
"My name is Miguel and I have Severe hemophilia A, growing up with hemophilia has taught me some things like never letting my hemophilia stopping me from doing what I love! Like cooking for my family or playing outside with my sisters or going to the park. Along my journey I have met the most amazing hemophilia team that has taught me everything there is to know about my condition and I can never forget to thank the BDFWA for everything they have done for us!!"
Miguel is an awesome student, a hard worker, and also an I-Vy Leader for the BDFW! This year Miguel stared as an I-Vy Leader as a counselor at Camp I-Vy and by creating an amazing team for the Bloody Fun Run! Way to go Miguel!
There is absolutely no doubt that Miguel is Thriving with Hemophilia!!
Wesley is 2.5 years old and was recently diagnosed with severe hemophilia Type A. He has received daily infusions since and also had a Port-a cath placed less than two weeks after his diagnosis. To say that he is a courageous and strong little boy would be an understatement. He loves music, playing, running and climbing and you wouldn’t know that he has hemophilia based on his activity level. He is also very sweet and loves to give IV’s and “pokes” to his parents for their daily infusion.
It's been a big year for Kaiser! Kaiser finished his first year of preschool, took his first season of soccer, tried ice skating, has fallen in love with fishing and is still the silly, energetic boy who we love dearly. The most notable thing that we endured this year was our first broken bone. Kaiser broke his left leg (tibia) while jumping on a neighbor's trampoline. As any parent can imagine it was absolutely horrible to see him hurt and in so much pain and with kaisers bleeding disorder it was important that Kaisers port was accessed and that he received infusions of clotting factor every 12 hours. Because of the access to care Kaiser has, his medication, doctors and network of people through the BDFW we were able to endure this trail the same as anyone else.
Zach is super brave and loves to play and show his friends new to hemophilia what it’s all about. He is super smart and concurs fears so fast! The other week he even held a little spider! Zach is most definitely thriving with hemophilia!!
"Normal levels of clotting factor are 50%-150% and Zach's body makes less than 1%."
I honestly don't know what we would have done without this group over the last year. They have helped our family navigate the physical, emotional and financial hurdles that is our new life with hemophilia. In turn, we want to do whatever we possibly can to support those who helped us so very much."
Aiden’s hemophilia was a surprise, a random mutation that his family couldn’t have prepared for. The news of a severe bleeding disorder was gut-wrenching. It was hard, and it could have been anyone. 30% of Hemophilia cases are caused by random mutations and take a family by surprise.
Aiden and his family had to learn how to survive with Hemophilia. The BDFW helped them do this. Through educational programs, and Camp I-Vy, Aiden and his family learned not only how to survive, but to THRIVE.
Aiden now is a promising boy scout, a soccer player, a little artist. In boy scouts Aiden is able to to do all the activities because he is tough and independent, and able to self-infuse his medicine on his own; which he learned at Camp I-Vy JR.