My Nonprofit Reviews

If anyone had asked me about hypothalamic hamartomas 4 years ago I would have been completely unaware that such a thing exists. My grandson Wyatt had been diagnosed with epilepsy and during testing for that, it was discovered that he also had a tumour on his brain. This was not news that anyone wanted to hear, however my daughter and her husband took it and began the long journey with Wyatt, in search of a better life with less seizures for him. Laser surgery was done on September 1, 2021 to remove the tumour. It was supposed to be an almost in and out procedure, they guessed at 2 - 3 days in hospital. Wyatt remained in hospital for 31 days with myriad complications from the disease. My daughter had been doing research from the moment she had been told of Wyatt's condition. She found "Hope for Hypothalamic Hamartomas" and got in touch with them straight away. Through them, she was able to learn so much more. She found other families that had been through the same types of post surgery issues thay Wyatt was now facing. He gained 27 pounds in the 31 days he was in hospital. Wyatt had always been a very slim, active, athletic child until that point. He was left with his body not being able to regulate its fluids, balance its sugars and salts, loss of muscle from being off his feet and pain all over from rapid weight gain, among other things. Hope for HH stayed in contact, encouraged my daughter the whole time, helped her with suggestions of ways to assist Wyatt along the new road he was on. Wyatt had been left with Prader-Willi symptoms from the surgery and continued to gain weight monthly even with a severely restricted diet. HH is a very rare disease, the complications that go with it vary from patient to patient along with the severity they experience. Much more research is needed to help these children find their way through the process of making a new life, it truly is life changing for them and their whole family. With an organization like Hope for Hypothalamic Hamartomas, there is a chance that more people will get the help and the support that is so important for them in a time of great importance. With more research, I have hope for the children and for our Wyatt.