Thank you for visiting TeamTyjah.com. The word “Tyjah” is derived from the names of my two my
grandsons, Tyler (10 years) and Elijah (8 years). They were both born with a very rare genetic
disorder called Methylmalonic Acidemia, or MMA. Team Tyjah is our racing team, which we use to help
raise awareness of this disorder.
From the National Institute of Health genetics Home Reference :
Methylmalonic Acidemia is an inherited disorder in which the body is unable to process certain proteins and fats (lipids) properly. The effects of methylmalonic acidemia, which usually appear in early infancy, vary from mild to life-threatening. Affected infants experience vomiting, dehydration, weak muscle tone (hypotonia), excessive tiredness (lethargy), and failure to gain weight and grow at the expected rate (failure to thrive). Long-term complications can include feeding problems, intellectual disability, chronic kidney disease, and inflammation of the pancreas (pancreatitis). Without treatment, this disorder can lead to coma and death in some cases.
Tyler and Elijah are doing very well these days, although they have each experienced numerous stays in PICU during metabolic crises. Elijah suffered a metabolic stroke 3 years ago and as a result is unable to walk without assistance. He is very determined to regain his ability and he is making steady, but slow, progress.
Since having G-tubes implanted in order to receive the metabolic formula they require for nutrition, they have had no metabolic episodes since 2011!
There is no cure for this disorder, but great progress is being made at the National Institute of Health Human Genome Research Institute by Dr. Charles P. Venditti, Phd
The MMA Research Fund is an organization that raises money specifically for MMA research and Dr. Venditti’s studies.
Donations to this organization can also be made through this site: Angels for Alyssa
The Organic Acidemia Association is a wonderful support group for families dealing with all types of organic acid disorders, including MMA, and has been there for Arlene and I over the years with all kinds of help.
I am appealing to you to contribute to these 501c(3) nonprofit organizations if
you can, we deeply appreciate any and all gifts to these fantastic efforts.
Thanks!
Paul Donovan