Help Mary Joyce Fight Pompes Costs

As many of you know, my Aunt Mary Joyce has Pompes Disease (a form of muscular dystrophy). My mother died from the same disease 12 years ago. My aunt has been getting biweekly infusions to delay the diseases progression. These infusions are very costly, and my aunt has been on disability due to Pompes for many years. There is a charity that has been supplementing a portion of her infusions, but that amount has run out. The portion that my aunt owes is now over $15,000 and Coram/CVS is requesting a payment of $1,300 per month. With the inability to pay, the infusions are being denied to her which means her disease will progress much quicker. She is also getting to the point that she needs her wheelchair 24/7, but they do not have a wheelchair accessible home or van, which means it is extremely difficult and dangerous for her to get out of the house…even activities of daily living are becoming more difficult and dangerous. Thank you for taking the time to read and give thought into donating or sharing to spread the word.

*Just a clarification- I spoke with Aunt Mary today, and it is Coram that is refusing to administer the medication due to the outstanding balance with them for their nursing services. They provide the nurse, IV tubing and pump, mixing of the medication, etc. She also said that Accesia (the charity that is helping with costs) has decreased their funding from $17,000 to $10,000 yearly. Once her paperwork is approved with the audit with Accesia she will have $10,000 for the year for these nursing services, but it cannot be used towards her past balance of $15,000. Medicare does not cover for the nursing services apparently associated with this medication, and my aunt said there are zero other companies that offer their services for it. The problem is that once this balance is paid off, it will just accrue again. I wanted to clarify this information since I believe transparency and communication are of upmost importance when it comes to someone donating money towards a cause.

Update 4/2/25. So far Mary has missed 2 infusions and is feeling the effects. She says her balance is more off than normal and an increase in pain. She does believe that she found the nursing company to be coding her care incorrectly, so they have recoded for correct billing and are sending it back to Medicare. If this fixes her current amount owed of $15,000 we are hoping all money raised can go towards widening doorways, making a bathroom wheelchair accessible, or going towards a wheelchair van. I will update when I have more info!