Thank you for visiting our fundraising page!
As some of you know, we found out in February that Brianna has a very rare lung disease, known as Neuroendocrine Hyperplasia of Infancy (NEHI). It is a form of children's interstitial lung disease (chILD). We are very thankful (and lucky!) that as far as chILD goes, NEHI is "mild", not progressive, and not fatal. It has been the cause of her breathing issues, and what was previously diagnosed as pneumonia 3 times. Brianna is active and happy just like any other two year old. But the NEHI causes her to get less oxygen than the rest of us, which means she has to work a lot harder to breathe. This makes it hard for her to gain weight, as she uses up too many calories just breathing. There is no cure for this disease, and there is not a lot known about it. We see doctors at MGH for Children and Children's Hospital, and even they can not answer a lot of our questions, which is scary as parents. Treatment for NEHI is "supportive", making sure that she gains weight, gets enough oxygen, and stays healthy. Because her oxygen level dips too low while she's asleep, Brianna is on oxygen therapy at night.
This coming August, the chILD foundation, which supports research on Children's Interstitial Lung Disease, is hosting it's annual conference in Colorado. After speaking with other parents and Brianna's doctors, we have decided to try to make the trip to learn first hand about the research that is being done on the causes and treatment of chILD, attend presentations given by the specialists who are leading the research, and meet other families who are experiencing this disease.
To help fund research in the hopes of finding causes, treatments, and cures, we have set up this fundraising page. Donations will go directly to the chILD foundation, and upon completing our fundraising, the chILD foundation will give us an allowance towards the cost of attending the conference. The chILD foundation has already been a source of support for us, but because these diseases are so rare, not many people are aware of them, making it harder to raise money to fund research. With your help we can continue to spread awareness of chILD, and head towards a cure!! Thank you for reading our story, and any donation that you're able to make will make a difference!
Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.
Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!