Let Me Tell You 'Bout My Best Friend

          My wife Beth and my niece, Addy, are like two peas in a pod. Maybe it's their love for all things girly while also being total outdoor nature lovers, or the fact that they can turn any situation into a dance party. Either way, she is one of the most determined, insightful, happy and caring kids who loves to make new friends, constantly learn new things, and challenge herself, while keeping a big smile on her face that we all know and love.
However, things are a little different for Addy on a day-to-day basis. As you can see in the picture, she has a walker which she completely relies on. Addy needs this to get around, as she has 4H Leukodystrophy. While she doesn't let much get in her way of living her life with her mom, Jenny, dad, Brent, and brother Jax, her limitations only push her and her family to make that much more out of life. While it is a rare disease with little research on the condition, it's life changing for those affected and their loved ones. If you aren't familiar with 4h Leukodustrophy, there is an overview of the condition below. We all know that medical fees can be detrimental to one's financial state, however crucial the care and equipment may be to keeping someone healthy and comfortable. To help my Beautiful Niece Addy and her wonderful family as well as other affected families in need, please consider donating to Team Addy & The Yaya Foundation  via the links at the bottom of this page. 
From our Family to Yours, Thank you.
The Walkers


What is 4H leukodystrophy? 

4H leukodystrophy is a rare genetic disorder that affects the nervous system. The name is short for hypomyelination with hypogonadotropic hypogonadism and hypodontia. The condition is also known as 4H syndrome or Polr 3-related leukodystrophy.


Leukodystrophy is a group of conditions that affect the white matter of the brain. These diseases damage the myelin sheath, which surrounds and protects the nerve cells in the brain and spinal cord and speeds transmission of messages between cells.


The process of the body forming this protective myelin sheath is called myelination. Typically, myelination develops in the first few years of life. Hypomyelination means that the body is unable to produce myelin at normal levels. This prevents the body from completing normal myelination of the brain, and in some cases, the nerves outside the brain.

4H leukodystrophy is the combination of that myelin deficiency and two other conditions: hypogonadotropic hypogonadism (a condition that results in delayed puberty) and hypodontia (having fewer teeth than normal or an abnormal development of those teeth).


People with 4H leukodystrophy often have motor problems, including stiffness of the muscles and joints and problems with balance and coordination. They may also have movement disorders, including tremor or difficulty controlling smooth movements of their arms and legs. As infants, they may have delay in teething or have teeth appear in an unusual order. They are usually small for their age, and they do not go through typical puberty.