Reese Gonzalez & Family

Hello everyone!

I am helping Miranda & Nick raise money for The International NKH Convention coming up in April! Anything is greatly appreciated. Please read below for a message from the family.

"We would like to provide a bit of an update on Reese and our next steps!

Reese is eating and working on building his head strength!! During therapy Reese is working to develop strength in his legs, develop the ability to hold his attention and the ability to hold on to objects.

Seizures are more frequent, averaging about four times per week but are mild. Medication adjustments are frequent for this growing boy, he definitely keeps us on our toes!

As you can imagine, day to day schedules and activities can be challenging. We are always on alert to find the most up to date research around Nonketotic Hyperglycinemia (NKH) which is limited and although the doctors at AI Dupont are phenomenal, they are not experts in this rare genetic disorder. This year we have the unique opportunity of attending the NKH conference that happens to be held on the east coast in Boston, Massachusetts. This conference is a time for NKH families from across the globe to come together to meet the leading NKH experts ONE on ONE. During this time the families will be able to hear from speakers on the most recent research surrounding seizures, nutrition, feeding issues, advances in genetics and the future of the children that are diagnosed with NKH.

The trip to Boston will be outside our normal financial capabilities but we know this is an opportunity we may not have within our reach in the future. Any donations towards this trip would be such a blessing to our family."