The Leukodystrophy Family Support Program (LFSP) was launched in 2015 to support low-income families living with ALD, AMN, and other leukodystrophies. To date, we have granted over $50,000 in financial assistance to leukodystrophy families in need. Our goal is to make a direct impact on the disease community by lessening the financial burden of care and living expenses for low-income patients and their families.
Andrew (24) was diagnosed with an unknown leukodystrophy at the age of 6. Since his diagnosis, Andrew’s condition has severely limited his mobility and he is now confined to a motorized wheelchair. Andrew is unable to work due to his condition. His current adjustable bed allows him to breath easier – that bed, however, is now 10 years old and falling apart. Andrew’s financial request to his medical insurance company was denied. We are glad to say that Andrew is getting a brand new adjustable Sleep Number bed that we hope will last for another 10 years.
Dwayne Forrester, Jr.
Meet DJ. He was born in 2004 with ALD but unfortunately, like most born with a rare disease, his parents were completely unaware of it. In March of 2016, at the age of 12, DJ started developing inflammation in his brain. He had to miss the entire 7th grade to undergo treatments. Dwayne’s younger brother Devin also has ALD, but luckily his MRIs are normal at this time. Their mother, Desirae, is a single mother who is struggling to make ends meet on only one income. We are grateful to our donors for making it possible for us to assist the Forrester family with living expenses.
Meet Aden. He was born in 2009 to a family of seven children. As an infant, Aiden’s parents noticed that he wasn’t developing normally so his parents started their diagnostic journey. Aden was diagnosed with ALD along with two of his brothers. Aden and his family are going through some difficult times. His father is only able to work part time to support the family. Making their situation even more difficult, Aden’s mom, Laura, was diagnosed with a heart condition. Thanks to people like you, we supported the Anderson family with rent and utility bill payments, food, gas, and a $100 gift certificate to Toys”R”Us.
Little Robert Fausto was diagnosed with ALD in late 2016. Rene, Robert’s mom, traveled with him to Maria Fareri Children’s Hospital in Valhalla, NY in hopes of getting him the best treatment available. This has meant that she has had to stop working to be by her baby boy’s side. Thankfully her family has stepped up to try and help her but they can’t do it all alone. They are hoping to raise enough money so that Rene won’t have to worry about losing her and Robert’s home in Pearland, Texas while they were getting treatment in New York. After negotiating a discounted rate with an air medical transport company, we helped fund the effort to get Robert back to his home in Texas.
Meet Bridger. He was born in July 2013 with an undiagnosed leukodystrophy. The disease has completely changed the family’s daily life. Bridger needs around the clock care to meet his medical needs. The Penney family has three children, and care for Bridger has put a strain on the family’s finances. We granted the Penneys a travel scholarship to attend the 2016 United Leukodystrophy Conference in Omaha, Nebraska, allowing the family to meet with medical professionals specializing in the leukodystrophies providing the parents with expert care advice and guidance. To learn more about the Penney family, click here.
This is Grady, who has a leukodystrophy of unknown etiology. As a toddler, he was not meeting any of his developmental milestones. After a long diagnostic journey and several MRI’s at the Cleveland Clinic, Grady’s parents discovered that the white brain matter was not developing in his brain. Grady now has severe hearing loss, cortical blindness, and depends on a feeding tube to receive all of his nutrition. He takes 14 medications daily to help reduce seizures and to attempt to help keep him comfortable. The Lyons family’s finances have taken a hit as a result of Grady’s care. We were honored to award the Lyons family a Travel Scholarship to the 2016 United Leukodystrophy Conference. To learn more about the Lyons family, click here.
Vicente Martinez, Jr.
Vicente is your typical, high energy young boy. He loves to run and play. When he grows up, he wants to be a quarterback in the NFL. But those plans changed when Vicente and his family found out that he had developed childhood cerebral ALD. Vicente has been on Lorenzo’s Oil and a low fat diet since his diagnosis. In an effort to stop the progression of the disease, Vicente underwent a bone marrow transplant at the University of Minnesota on July 4th, 2016. The Martinez family lives in New Mexico, therefore travel to and from the hospital was a large expense for the family. We were able to help with travel, food, as well as out-of-pocket medical and living expenses. Vicente’s first transplant did not work, therefore he underwent a second procedure which thankfully has been successful.
The Suppan family’s journey with ALD began in 2003 when their son David was diagnosed. It was unfortunately too late for treatment. David passed away in 2006 at the age of 10. His younger brother, Sean, underwent a bone marrow transplant in 2009 at the age of 4 at The University of Minnesota. After some setbacks, Sean is now doing well despite some osteoporosis and neuropathy in both legs. Sean’s dad suffered severe nerve damage due to complications from a minor hernia surgery that has tragically left him unable to work. Now the family relies almost entirely on public assistance. We granted the Suppan family a travel stipend to pay for food, gas, and a two night hotel stay for Sean’s check-up at the Leukodystophy Care Center at the Children’s Hospital of Philadelphia.
Meet Dawson. He was diagnosed with ALD at the age of 2 in 2008. On May 11th, 2016, Dawson underwent a bone marrow transplant to address the lesions in his brain that were progressing. His mom, Shari, is a single mother who has been out of work for several months to care for her son full-time during the procedure. Shari has, as a result, fallen behind on her bills. She has been living at the Ronald McDonald Charity House to be with Dawson for the procedure. We purchased $500 in gas and grocery store gift cards for Dawson and Shari.
Clayton Smith, IV
Clayton is young man from Florida who was diagnosed with the adult form of ALD, also known as AMN. Before the onset of the disease, he was a sharp, responsible, hard-working young man. Clayton was active in his community, even reaching the level of Eagle Scout. According to his dad, he is a “diligent and strong young man.” Last year, Clayton underwent a bone marrow transplant at Johns Hopkins University to halt the progression of the disease. The procedure, treatment, rehab, and insurance co-payments have been a financial burden for the Smiths. Thanks to our donors, we granted Clayton and his family $5,000 to pay for out-of-pocket medical expenses and the installment of a wheelchair ramp to the front door of Clayton’s home.
This is Liam Morgan. He was born with ALD in 2014. Thanks to New York’s addition of ALD to its newborn screening program, Liam was diagnosed with ALD at birth. 3 MRIs revealed cerebral involvement, therefore, at only 9 months old, he received a bone marrow transplant from the Childrens Hospital of Pittsburgh – 250 miles away from their hometown of Akron, New York. Due to gastrointestinal graft verses host disease, Liam has had to remain in the hospital for months. Liam’s mother has been living in the hospital’s Ronald McDonald House Charities since the transplant, and his dad Joshua has put more than 40,000 miles on his vehicle. Thanks to our donors, we were able to provide a $5,000 grant to the Morgan family for gas money, super market credit, and assistance for back rent owed to their landlord.
Jacob Wilhoit, a ten year old with ALD from Middleton, Ohio, had to remain hospitalized for more than 200 days due to complications associated with his bone marrow transplant at Cincinnati Children’s Hospital Medical Center on April 1st, 2014. Jacob’s family had to drive 64 miles round trip to the hospital to see him. His mother quit her job so she could care for him full time. Thanks to our donors, we were able to grant Jacob Wilhoit and family $5,000 to assist with food, gasoline, and utility bills.
Austin Owens is an eight year old boy diagnosed with ALD in early 2014. He received a bone marrow transplant three months later at Cincinnati Children’s Hospital in order to halt the progression of the disease. The transplant and hospitalization were a huge financial strain on the family. When Austin went home, his family was unable to afford medical equipment for him which was not covered by his insurance. Due to the generosity of our donors, we were able to grant the Owens family $5,000 to pay for medical equipment and a power recliner bed, allowing Austin to sit comfortably with his family and friends.