Hello all at CRDN! I wrote the following about a new foundation I’m starting, and decided to share it with all of you as you can probably relate!
My head has been full of ways to write a slick, professional essay on why we started The Ainsley Paige Higgins’ Dare To Hope Foundation, Inc…..an essay which will impress media giants and mega-multi -million dollar corporations with fancy statistics and pie charts. An essay so great that everyone who reads it will band together to rid the world of all diseases affecting our children. The sun will shine; the birds will sing; and lollipops will grow from trees.
This is not that essay.
This, instead, comes from my heart; the reality of my experiences; the parents and children I’ve met along my path.
For those who don’t me, I am the mother to the most beautiful twin girls in the known universe, a completely unbiased observance. They are sweet, funny and happy little rays of sunshine who have brought incredible joy to my life and the lives of those who love them. They also happen to have mitochondrial disease, a rare and life-threatening condition.
I consider myself overwhelmingly lucky to have unwavering support from family & friends, who have stood beside me through group updates, stressed-out behavior, months of hiatus at a time and routine pleas for donations & support, to name only a few of my more endearing habits. My parents babysit; my friends made donations to help pay for our monthly medications and recent stint at an intensive therapy center; I have several people on speed dial I don’t hesitate to call whether I’m happy, sad, angry or mad. Mitochondrial disease has two major organizations funding advocacy and research towards treatment & ultimately a cure for my daughters, although neither currently exists.
There are countless families affected by rare disease who have none of these things.
I have met some amazing children and families dealing with amazing and terrifying conditions. I have met parents whose children live with rare diseases. I have met parents whose teenage children are undiagnosed despite years of testing. I have met children who are the only one in Georgia living with their diagnosis. I have friends in the “diagnosis of the month club”, whose children receive varying diagnoses depending on the doctor, psychologist, field expert, or whether the wind was blowing west that day. I have met families who have genetic mutations which are so rare they have no name. I have met a woman whose daughter is the only known person in the world with her specific genetic disorder.
And this is just in the state of Georgia.
For these people, there are no host organizations providing information and support. They have little or no resources to apply for financial help. They don’t know of the resources available because their time is spent in therapy centers, doctor’s offices and hospitals. Their children don’t have the proper medical equipment or supplies. I know people who have no family in town or family who either does not or cannot understand how to care for their children so they can have a night out. Many of these parents feel helpless and alone.
And it is for these families that we will find a way. I believe with all my heart that no family should be alone in this. I believe that our community will strive to help these children. I believe we can offer hope, the most rare and valuable commodity imaginable.
Together, we can and will better the lives of these children.