For all with bleeding disorders, life is unpredictable. A bleed can happen at anytime, sometimes with no trauma. The road to an accurate diagnosis takes time. A treatment plan takes fine tuning. My twins have identical dual diagnosis' but they are both different types of bleeders. They've been through a lot. Bleeds, surgeries with complications, bone marrow biopsies, blood transfusions (endless thanks for those who donate blood) tweaking meds, the list goes on and on. We adapt and move forward. My hope is that with gene therapy, there will be a cure...eventually.
Until then, we pack a fancy bag full of factor and head out to wherever we go ready in case a bleed happens or they get hurt just simply being a kid.
Thousands of kids and adults affected face internal bleeding, costly treatments and lifelong infusions.
I’m all in to help end bleeding disorders. My personal goal is to raise as much as possible for this worthy cause. Will you help me reach my fundraising goal? It’s easy — just click “donate” to make a secure donation.
Every dollar stays within our community and supports critical initiatives such as funding research to find better treatments, educating medical providers on the latest innovations and care, ensuring families have access to quality healthcare and providing access to the best educational resources available.
Will you help me reach my fundraising goal? Please make a donation today.
Thank you in advance for your support and united, we will make a difference.
I'll be posting more info about our personal story as we get close to our walk on October 2nd. ❤
Nolan, Logan & Jen