Sydney Massey's Medical Expenses

Hi, my name is Paige and I am fundraising for my daughter Sydney's astronomical Medical Expenses and daily living expenses. Over the last four years she has been diagnosed with Seizures, Idiopathic Intracranial Hypertension (IIH), Ehlers Danlos Syndrome (EDS), Eagles Syndrome, jugular vein dysfunction, and most recently with Craniocervical Instability. She also suffers from Endometriosis, PCOS, and Interstitial Cystitis as well as high level anxiety and depression. Needless to say, the last four years have been unbelievably trying and have depleted all financial resources. The lastest diagnosis of Craniocervical Instability requires a highly specialized neurosurgeon (of which there are four in the US) and so far two of them do not accept any insurance meaning they require all payments up front before any testing or surgery. This is just not possible right now and we have no other choice but to ask for your help. Sydney is completely disabled and in bed 90% of the time. She sees a neurologist, neurosurgeon, ENT specialist, neuro-ophthalmologist, OB/GYN, as well as a pain specialist. She has a right side VP Brain shunt placed in July 2020 and had a left side styloidectomy this last November as well as Jugular Vein Decompression. She is on 24/7 pain meds, anti-seizure meds, anti-depressants, blood thinners and is barely able to perform normal daily functions. We have applied for disability but just got the first denial after 18 months. We have started the appeals process but not telling how long this will take. If you are able, we would certainly appreciate any help and all the prayers we can get!! All the money raised will be going toward all of her medical expenses and daily living expenses.

We have also set a goal to build her a tiny home so that she can have some type of privacy since she will be turning 26 in a few days. This will be placed on our property so that she will have the help she needs within a few short steps. She has a heartfelt desire to be more independent and her medical team is working extremely hard to get her to that point. But, having her steps away will provide her with the help she needs until she gets there. Thank you from the bottom of our hearts for your prayers and support.