Noa's Medical Expenses
My name is Kyle, and this is a picture of me and my daughter, Noa. Noa is 9months old and has Congenital Adrenal Hyperplasia, a condition she will live with for the rest of her life. I am starting this gofundme to help pay for all of Noa's recent medical expenses and medication.
When I was pregnant, I travelled to the UK to be with my family during her birth. It was there that I was told about Noa's cyst during my 38wk scan. Slightly worrying since this was the first time I had heard about it. I was induced at 42weeks, and on her arrival there was small confusion as to her sex. Noa's condition caused virilization and no one was sure whether she was male or female until they ran blood work. Noa was taken to get an ultrasound and scan to check on the status of her cyst and they used umbilical cord blood to check her gender. We remained in the hospital for 18 more days where they continuously drew blood every 4 - 6 hours daily. Finally after some time someone was able to come and explain that Noa was in fact female and she suffered this condition. Its extremely rare and effects large parts of her health, development and growth. If it goes unmanaged or incorrectly medicated it can cause fatal damage.
CAH inhibits her body from making hormones, so we use daily medication to replace what she doesn't have or cant create herself. This medication is essential to life and without it we risk Noa going into adrenal crisis. We remained in the UK seeking help from specialists and gaining an understanding of this rare condition and how to manage it but we had help from the national health system and never needed to pay for her care. After several months, I returned with her to the US where we have hit several problems.
We are running low on 2 of her 3 medications and have completely run out of the other. Her medication here is extremely expensive and not yet covered by state insurance because it isnt on some preapproved list, her condition requires bloodwork every 3 - 5 weeks to ensure her growth isnt effecting her dosage and she is in need of ultrasounds and surgery to remove the cyst, but again this is not covered by insurance because it has been deemed unnecessary for life. I am constantly undergoing battles with her insurance company , but while I wait for a hearing, I am forced to pay everything out of pocket to ensure my daughter gets the help she needs. So far I've faced Dr's appointments that cost $449, medication that costs $1600 and blood work that costs $1250, all of which barely even cover the few weeks shes been seen. Any size donation is extremely helpful in giving Noa the medication she needs to survive.
I just want to thank everyone who has given us/our story their time and thoughts. I am so appreciative of all the support we have been given and im truly humbled by the amount of love we have been shown.
For more information on CAH please watch the following video, or visit the following link.
http://www.caresfoundation.org/what-is-cah/classical-cah/