Please Note: All of the net proceeds from this year’s event will benefit the Morehouse Family.
Below is a note from the Morehouse Family...
Teagan has had a GoFundMe site set up for years, but I decided to create a new one. Over the past few years we have raised a lot of money for her treatment with the help of friends, family, and strangers. The reality is, this is going to continue to be an ongoing battle for the next few years. 95% of Teagan’s treatment is not covered by insurance. This is a fight families all around are going through with a PANDAS/PANS/autoimmune encephalitis diagnosis. Legislators are looking at the issue, but it’s not helping us now. Just last year alone, Teagan’s two chemo infusions were over $60,000. She is so severe they are telling us that she will need them every 4-6 months for the next few years, with IVIG infusions in between. They are not covered either! I can’t work because she needs 24/7 care. My husband is on FMLA to care for the other kids without pay. How is anyone supposed to do this? It’s either I rob a bank or watch my child suffer. So, until something changes, this is the reality. In the meantime, our local newspaper is doing a story on her. I’m also working with legislators, media, and attorneys to fight this. Here we go.... We took Teagan to Johns Hopkins last week. She is being set up with the encephalitis center there. Their concern is that her EOE is triggering her encephalitis. They think they go hand and hand. We also had to take her to see her neurologist in Washington DC. We drove, and made it half way before needing ambulance assistance. We are at her neurologist right now, and her symptoms are so severe they immediately hooked her up to chemotherapy. This is the Rituximab we are fighting the insurance to pay for. We have a few days to come up with the cost in the meantime. Then, we will need to stay by the hospital for 2 weeks in a hotel in order for her to get her second infusion. She is going to need these EVERY 4-6 MONTHS FOR THE NEXT FEW YEARS!! And in addition, she will need IVIG infusions for her immune system in between! They aren’t covered by insurance either!! I’m just sick to my stomach. She is SUFFERING!! This is beyond unfair. Please help us spread this around!! Not just for financial assistance, but to get the word out and make people angry!! We need change!! Something has to change!! We are looking for any hotel points, etc people may have as well. I have no idea what we are going to do. Please feel free to share this story....
As friends and family are learning this news, many are asking what they can do to help. For those that are able, we are asking for your support in any way possible. No matter how small your contribution, it can make a real impact by taking away one more thing to worry about and helping this family focus on their daughter's recovery and care. All money raised will go directly to the Morehouse Family to help with medical and other expenses.
The Morehouse Family is so very grateful for the outpouring of love and support that they have been receiving. They know that they are not alone in this journey!
The Mighty Max Johnson Heart Foundation is a volunteer organization created and organized exclusively for charitable and educational purposes within the meaning of Section 501(c)(3) of the Internal Revenue Code of 1986, and carries on activities in furtherance of such purposes.
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