Maria & Diego's MLD Battle

Hi, I’m Christy. Maria and Diego are my niece and nephew. Both have recently been diagnosed with Metachromatic Leukodystrophy. This disease is very rare and is degenerative, highly progressive, and deadly. There is no cure. MLD, short for Metachromatic Leukodystrophy, gradually causes a loss of all motor and neurological functions. The sufferer loses the ability to walk, talk, and swallow. They lose all intellectual, thinking, and memory skills. In later stages, seizures, blindness, and hearing loss are common. Once it is discovered, life expectancy is only 4-15 years. MLD has no cure, but treatments have been developed to slow and even halt the disease's progression while providing improved quality of life.

Maria already had a rough start to life before this diagnosis. She was born at 23 weeks gestation weighing 1-1/2 lbs. She had a brain bleed during birth that led to Cerebral Palsy and Dystonia. She has fought hard her whole life. For the past year and a half her mom, Casey has been trying to get answers for her regression. Due to Maria’s stage in MLD she will not qualify for any treatments. Maria has lost so much to this nasty disease already. She can no longer walk with her walker, she has lost almost all ability to speak, she can no longer help in her self-care, and she gets confused easily. Maria still loves to watch TV and enjoys eating very much although that is starting to get difficult as well. As Maria regresses her needs will change. Maria does have insurance, but they have denied many bills, accessible equipment as well as physical and occupational therapy which is still very much needed to keep Maria comfortable.

Diego is still symptom-free. So far, he seems to be a great candidate for a bone marrow transplant. They are now in the beginning stages of trying to find a bone marrow match. His mother Casey is working on trying to secure health insurance for her son Diego, but right now they are paying for everything out of pocket.

Casey has endured thousands of dollars between both Maria and Diego’s doctor’s appointments and tests so far. If she cannot secure health insurance the bone marrow transplant is over $500,000. Time is of the essence in treating this disease as any regression cannot be reversed.

The bone marrow transplant process will mean 6-8 months in the hospital starting with aggressive chemo. This means Diego will be in the hospital while his sister Maria is at home. The doctors are not able to tell how much longer Maria will be with us as she is regressing quicker than normal. I can only imagine how my sister Casey feels trying to be in 2 places at the same time to be with both of her sick children.

Please put your arms around this family by donating whatever you can to help. The bills have already started to pile up and as you can imagine are becoming very overwhelming when Casey should be able to focus on getting her children the health care they so desperately need. Any donated funds will go towards the medical bills that are already pilling up, travel costs to MN for the transplant and medical needs for both Maria and Diego. Your gift of any amount will make a hopeful impact on Maria and Diego’s life. Please share this as far and wide as you can.

You can follow their journey on https://www.facebook.com/profile.php?id=100088674196133&mibextid=LQQJ4d