Madden's Fight

Hi, my name is Heather and I am the mama of the sweetest, 9 year old, little boy. Here is our story:

Madden was developing normally until the age of 3 and a half when he had his first seizure in January of 2019. From January until December Madden was diagnosed with Epilepsy and was referred to a neurologist. During this time we noticed that he was starting to regress. One thing that stood out, in particular, was the widening of his gait and the deterioration of his balance. By late November we noticed a twitch in the corner of his mouth. We brought him to our local emergency department where he was medevaced to the closest children's hospital, a 5 hour drive from where we live. Madden was admitted for 12 days where he underwent a series of tests from MRI's to skin biopsies to lumbar punctures. He was discharged and we were sent home to wait for the results. On December 12, 2019 we received a call that changed our life. Madden was diagnosed with Batten's Disease (also known as neuronal ceroid lipofuscinosis (NCL), is a group of rare, inherited, and fatal neurodegenerative disorders that primarily affect children, causing progressive loss of brain function, vision, and motor skills). After another trip back to the children's hospital for further testing we received confirmation of the type, CLN2.

With this diagnosis our perfect little boy then endured brain surgery where a device was implanted into his brain so that he could receive an ERT, called Brineura, every 14 days. I would love to tell you that this is a cure, however, its purpose is to slow the progression of the disease. Since his diagnoses, Madden has received a feeding tube, requires a wheelchair and has lost most of his vocabulary. He is still a very happy little boy and we are so grateful for good days.

Given the level of care that Madden requires, we made the decision for me to pause my career. Every second with him is precious to me. However, with a medically complex child comes uncommon and unexpected expenses. We have decided to set up this page so that anyone who wishes to donate, can. And to those who can't, we are thankful that you have read our story. Our main goal with Madden's Fight has always been to raise awareness as this is an ultra-rare disease. Please help us share Madden's story so that one day there may be a cure.

Please feel free to follow along as we navigate the world of rare disease with the most perfect superhero.