Help MLD brothers, Emmanuel and Samuel
Help MLD brothers, Emmanuel and Samuel
Please
help me raise money for my family. Two of my four children, Emmanuel (4 years old) and Samuel (3 months old), have been diagnosed with Metachromatic Leukodystrophy (MLD), a highly progressive and rare genetic brain disease, which is fatal. Emmanuel’s MLD has already started to progress and he has worsening symptoms. Samuel has not yet shown symptoms, and he is getting treatment before the disease progresses. This treatment will not cure Samuel, but it may help him have a healthier life.
In
August, Samuel will receive a bone marrow transplant (BMT) at Duke University Hospital. Not only is the treatment expensive, but Samuel will need regular check-ups at Duke for the rest of his life. His older brother, Emmanuel, will also need lifelong healthcare and assistance. This will be a huge financial burden for my low-income family. My goal is to raise $40,000 to help with expenses for my family. This money will cover childcare and transportation costs to Duke, as will as offset living expenses for me caring for two sick children.
Learn
more about MLD at http://curemld.com/.
My
Story:
when
I found out that my third child, Emmanuel, was diagnosed with the fatal brain disease MLD, I was devastated. Since MLD is genetic and can be passed down from parents to children, my youngest, Samuel, needed to be tested for MLD whenhe was born. The results came back and confirmed the worst. At just one month old, Samuel, who looked like a perfectly normal healthy baby, was also diagnosed with MLD. Eventually, without any treatment, he would lose the ability to walk, talk, and eat. With treatment, he may have a healthier life than his older brother, but hewill still have MLD.
I
got in touch with other MLD families and patient advocacy groups. I am seeking treatment at Duke University Hospital for my children. The doctors there recommended that Samuel receive a bone marrow transplant before his symptoms progress. Once symptoms start, they rarely improve later on, but treatment before symptoms begin is the best chance of delaying samuel’s disease.
A
bone marrow transplant will not cure Samuel. He will need lifelong medical care,as will his brother Emmanuel, to help manage the progressive disease. While MedicAid will help cover transplant costs, I will need financial assistance for my trips back and forth to Duke, as well as for healthcare equipment and specialized care at home for the rest of my son’s lives. No cure exists yet for MLD. The hope is that these experimental treatments and regular care will help prolong and improve quality of life.
About
The Disease
MLD
is an extremely rare, fatal brain disease which destroys the protective fatty layer (myelin sheath) surrounding the nerves in the central nervous system. It aggressively takes away motor function and other abilities, which is why patients lose the ability to walk, talk, eat, and more. This disease is inherited from parents who each carry one copy of a mutated gene. If both parents carry the mutation, there is a 1 in4 chance their child will contract MLD. Unfortunately, 2 of my children have MLD. When the symptoms show early in life, most children are not expected to live many years longer.
Here
is a short 3 minute video that explains MLD and why it causes disease:
https://www.youtube.com/watch?v=MBghKIUHcTI
Hope
for my Family
Your
support will not only help Emmanuel and Samuel receive treatment, but it will also provide much needed relief for my low-income family. Having two children with special healthcare needs is extremely burdensome financially. I cannot thank you enough for any help or support during this time.
Best,
Anna