
Azley Slayne Medical Travel Lodging Expenses
Spende geschützt
My name is Keanna Bartelli, I’ve created this go fund me in support of my niece Azley as her and her parents start their path down this long road. We can’t ask you to donate, but we do ask that you keep Azley and her family in your prayers. ❤️
Some of you may know my sister Peyton, her fiancé Tyler, and their two sweet babies, Barron (4) and the newest member Azley.
When baby Azley was born, just like all babies, she had numerous newborn screenings. Testing for things as simple as a tongue tie, and beyond.
And just like that, they were given news that no parent wants to hear.
Azley tested positive for a rare genetic disease called Gaucher Disease.
Gaucher Disease (pronounced go-shay)
**Gaucher disease is inherited as an autosomal recessive disease. The disease is caused by a deficiency of the enzyme glucocerebrosidase, essential for the metabolism of glycolipids.**
**There are three types of Gaucher disease:**
Type 1: Chronic non-neuropathic; adult Gaucher disease
Type 2: Acute neuropathic; infantile Gaucher disease
Type 3: Subacute neuropathic; juvenile Gaucher disease
Patients with all types of disease have hepatosplenomegaly and large glucocerebroside-rich cells (Gaucher cells) infiltrating the bone marrow.
Type 2, infantile Gaucher disease, carries the worst prognosis, with children seldom surviving beyond 2 years.
**Type 1 disease is the commonest, usually presenting in childhood with hepatosplenomegaly, but not uncommonly in middle or old age.**
Bone marrow replacement and hypersplenism result in anaemia and thrombocytopenia.
**Pathological bone fractures and avascular necrosis of the femoral heads are not uncommon.**
Azley has not just one type, but two different types of the Gaucher’s disease. In her short life, she has already endured more doctors visits and tests than any child should have to go through.
We as a family, are doing anything, and everything in our power to make sure Azley has the best care, and best doctors fighting with her and for her. We will stop at nothing to make sure she is getting the best treatment we can get her.
Our next step is a specialist in Virginia, in which my sister will be flying with her newborn baby in the coming weeks. Treatments, are around 200k. As of now, we do not know the extent of treatment Azley will be receiving. However most common treatment types are every 2 weeks.
Asking for any kind of help, goes against every fiber of our being. Especially during these rough times we are all encountering. We just ask for support, and prayers. If you would like to help in more ways, please reach out.
I will be doing many raffles/fundraising with my photography, so please look for those announcements on my page in the very near future.
I will make some sort of support group for them soon. If you’d like to join with us, offer encouraging words, prayers, and kindness, it will never go unnoticed. Maybe this will reach someone that is going through something similar, we can never receive too much information and experiences other may have.
Thank you all.
Azley Slayne ❤️
Organisator und Spendenbegünstigter
Keanna Bartelli
Organisator
Arma, KS
Peyton Bartelli
Spendenbegünstigte