It affects a lot with how the brain works, so if you want to know the science or specifics, I recommend going to https://maodf.org. The basics of this disease are that she has a significant reduction in MAO A, which is an enzyme that primarily breaks down serotonin along with some other neurotransmitters. This causes day-to-day life to be very difficult. This is because any stimulation raises the levels of these neurotransmitters which can easily become dangerous.
This means that watching TV, being on your phone, being outside, interacting with people, listening to music, the AC fan being on, being in the presence of light, even digesting food can become debilitating if she doesn't get frequent and long breaks from them.
Since this disease is so rare, there is very little to nothing out there in terms of treatment. But we found hope in getting her DBS surgery, which is an invasive brain surgery to help her manage with every day life. Due to the rarity, a customized approach is needed. We went through multiple surgeons in order to get such a customized approach for her and are finally on the second stages of pre-op appointments with a neurosurgeon and his team down in Florida. We also found a foundation that is researching several treatment options, which is the MAO Deficiency Foundation. Through meeting with them and members on the disorders medical advisory team they said Emma is guaranteed to go into human trials after they get it approved for safety. We're not sure if these options will help, but we're hopeful.
The issue we are running into now is that we are not able to afford the traveling expenses, days off, lodging, and any other miscellaneous medical expenses that come up when we go to the surgery pre-op appointments or to conferences with the MAODF. Within the next year, she should have her brain surgery, and I will need to take a month off to take care of her, after which, we'll both need to go down every two weeks for several months to meet with the surgeon. We tried to do this on our own as much as possible, but we dug ourselves a hole just to keep our home while going to these, and we are at a point where we need to ask for help. More importantly, we won't be able to afford to get her this treatment without help. We tried numerous different doctors to get her help, and now that someone might be able to help her, we don't want to miss out on it because we can't afford it.
Any contributions would be immensely helpful to us.
-Thank you Devon and Emma


