Welcome to Brodyn's Friends!
What is Brodyn's Friends?
A 501c3 charitable organization (pending) that gives caring people like you the opportunity to make an immediate difference in the lives of children and their families affected with NKH.
Our Mission:
Find a Cure for Nonketotic Hyperglycinemia (NKH) and to provide comfort and resources to families with children suffering from the disease.
Our Values:
Courage, Commitment, Love, and Compassion
Our Vision:
That one day Children with NKH are able to live normal healthy lives due to treatments discovered from the research that is funded from Brodyn's Friends. Through the tireless efforts of many dedicated people, a cure is found by 2016.
What is Nonketotic Hyperglycinemia (NKH)?
NKH is a rare and still incurable metabolic disease affecting less than 200,000 children nationwide. NKH is an inborn error of metabolism characterized by the accumulation of large amounts of the amino acid glycine in the blood, urine, and particularly the cerebrospinal fluid (CSF). Children affected with this disease are missing the enzyme that breaks down glycine. This buildup of glycine in the brain and CSF cause neurological impairment which is seen almost immediately after birth. The prognosis is poor and most patients die in the first few weeks of life. Those who survive have intractable seizures and poor neurodevelopment outcomes. NKH has a wide spectrum of severity ranging from the most severe cases leading to an early death to a more rare and mild form of the disease leading to mild mental retardation and developmental disabilities. Progress has been made over the last decade for better treatment options but no cure has been found. A few medications have been found to help with the symptoms although these medications must be started early in life to show any benefit. It appears that the best that can be hoped for NKH children is simply to employ comfort measures along with other medications as they become available. We can only hope that even more accurate diagnosis will be available very soon, and that in the near future, this terribly sad disease will be wiped out completely!
Our Story:
Brodyn James Leslie was born on April 2, 2008 to proud parents, Dan and Heidi Leslie. Although Brodyn was very tired and lethargic shortly after birth, no one had any real reason to worry and the doctors assumed it was due to his jaundice. With the exception of some slight gross motor delays, Brodyn developed normally until he was 10 months old. In February of 2009, Brodyn came down with what we thought was a slight cold/flu type illness that led to unexplained seizures, which caused him to stop breathing, and he was admitted to Akron Children's Hospital for 8 days. After exhausting genetic testing and several months, it was found that Dan and Heidi's beautiful baby boy had NKH, with a twist. Both parents must be carriers of the gene in order for the children to receive it. Heidi passed Brodyn the classical gene and Dan passed Brodyn a Novel Gene which is a gene that has never been seen in any other patient nationwide. The doctors believe that this novel gene is allowing Brodyn to progress better than most children with this disease. Because of this, it is impossible to know what Brodyn will or will not be able to do in the future. His biggest challenges currently are walking and gross motor skills, fine motor skills, and speaking. Brodyn attends different therapy sessions weekly with the addition of horse therapy just recently. He also attends a special integrated preschool where he receives more therapy on a daily basis. In addition to the hope that this novel gene mutation gives us, is Brodyn's work ethic, courage, spirit, and love for people are truly inspirational.
How can you help?
You can donate Money, resources, time, or all three. Our immediate goal is to raise $1 million dollars by the end of 2012. Simply click on the donation section of the website (activated on or around October 1st) or contact us directly: heidi.leslie@nmfn.com or 330-414-9949
Where does the money go?
Dan and Heidi are truly blessed to have Brodyn as their son and he has inspired all of us to give back to others. Through the last several difficult months Dan and Heidi and others dedicated to Brodyn's Friends have been blessed to come into contact with children and families around the country and world affected with NKH. This is how Brodyn's Friends has come to be.
75% of money raised will go to help find a cure and up to 25% of donations will be distributed to Brodyn's friends with NKH and their families. We know there are many families struggling to give their children what they need for better development and to keep them comfortable. $40k is enough to fund one researcher for one year.
PLEASE TAKE 5 MINUTES- MAKE A DIFFERENCE! - DO WHAT YOU CAN
BE PART OF FINDING A CURE