Tristan Law Medical Need

Tristan Law is a wonderful, affectionate and loving 9 year old boy who lives in Fort Worth Texas. He is a 3rd grader at Independence Elementary.  He was a bright boy and his Grade 1 teacher in South Africa thought that he could become an engineer. However, recently Tristan began to day dream a lot and had difficulties with learning. An MRI in October of 2016 revealed extensive damage to his brain due to a very rare genetic disorder called Metachromatic Leukodystrophy  (MLD).  MLD is a degenerative and incurable disease that progressively damages the nerves in the brain and nervous system. It is caused by a lack of a critical enzyme Arylsulfatase A that our bodies manufacture. This enzyme is necessary to break down lipids and without it the lipids build up and become toxic to the nerve cells. The disease eventually leads to overall paralysis, inability to eat and drink,  loss of sight, speech, hearing and eventually death. There are various forms of this disease. Tristan has the juvenile form which usually progresses over a period of ten years between diagnosis and death. Experimental bone marrow stem cell transplants have been known to cause some stabilization in some patients. Unfortunately this treatment is not able to reverse any damage already done.   So the news for Tristan is not good at all. The doctors say that Tristan’s brain already has significant damage.  His parents have decided to pursue treatment for him at the Children’s Hospital of Pittsburgh. This facility is only one of the very few facilities in the USA that specialize in treating this specific condition. They are currently seeking a bone marrow (stem cell) donor match for him.
 
Naturally this news is a devastating blow to Tristan’s parents who recently immigrated to the USA from South Africa. His dad Cedric works at Costco and his mom Francoise works in accounting for a food manufacturing company.  They had recently purchased a home in Fort Worth and were just starting to recover from the stresses and costs of immigration when this news broke.  Francoise will be able to work remotely but Cedric will be taking unpaid leave so they can move to Pittsburgh for the duration of Tristan’s treatment.  The family will be staying at the Ronald McDonald House of Charities during this time.  Tristan has younger twin brothers (aged 4). Thankfully they have tested negative for this condition.
 
Please join us in financially supporting this dear family. Our goal is to raise around $25,000 to assist with Tristan’s care over the coming years. There will be considerable medical and travel expenses as well as a loss of family income as Tristan’s care needs increase. We will continue to provide updates on Tristan’s condition as we learn more, but the financial need is immediate.
 

Anything you are able to donate will be greatly appreciated by the family and go a long way. If you are unable to donate. Please send the family a message of encouragement to help lift their spirits".  Please share Tristan's story.