Laura's Handicap Van Fund
Donation protected
There is no cure for those with MLD.
5 years ago my cousin Laura was diagnosed with a disease called metachromatic leukodystrophy or MLD for short which is a rare genetic disease that affects the nervous system. In people with MLD, white matter damage causes progressive deterioration of intellectual functions and motor skills, such as the ability to walk. Affected individuals also develop loss of sensation in the arms and legs, incontinence, seizures, paralysis, an inability to speak, blindness, and hearing loss. Eventually they lose awareness of their surroundings and become unresponsive. While neurological problems are the primary feature of MLD, effects of sulfatide accumulation on other organs and tissues have been reported, most often involving the gallbladder.
Laura is a happy girl whom has mastered the art of focusing on the good things in life and not letting this disease get her down. With the progression of this disease she now has full paralysis, and will be confined to a wheelchair for the rest of her life. She is legally blind and can barly talk, only with a whisper. Laura can no longer drink and needs to receive all fluids through a tube that's directly linked to her stomach (gtube). This is part of the expected progression of her disease. She's been averaging 3 trips to the hospital every year. While her parents have been there every step of the way doing everything they can to make life easy, comfortable, and most of all enjoyable for her, I'm sure this has taken a toll on them.
The purpose of this page is to hopefully provide the opportunity to provide this family with a wheelchair accessible van they may use for their everyday activities. Currently Laura must be picked up and placed into the family vehicle and the same with the chair. The chair is not your normal wheelchair; it is much heavier than that. Paul and Darlene Glaudemans are doing their very best to accommodate and I have never heard a complaint come from them. I would like to be able to give this to them just to make life a little more enjoyable, and make my cousin just a little more comfortable. I thank you for your consideration and contribution to this family.
5 years ago my cousin Laura was diagnosed with a disease called metachromatic leukodystrophy or MLD for short which is a rare genetic disease that affects the nervous system. In people with MLD, white matter damage causes progressive deterioration of intellectual functions and motor skills, such as the ability to walk. Affected individuals also develop loss of sensation in the arms and legs, incontinence, seizures, paralysis, an inability to speak, blindness, and hearing loss. Eventually they lose awareness of their surroundings and become unresponsive. While neurological problems are the primary feature of MLD, effects of sulfatide accumulation on other organs and tissues have been reported, most often involving the gallbladder.
Laura is a happy girl whom has mastered the art of focusing on the good things in life and not letting this disease get her down. With the progression of this disease she now has full paralysis, and will be confined to a wheelchair for the rest of her life. She is legally blind and can barly talk, only with a whisper. Laura can no longer drink and needs to receive all fluids through a tube that's directly linked to her stomach (gtube). This is part of the expected progression of her disease. She's been averaging 3 trips to the hospital every year. While her parents have been there every step of the way doing everything they can to make life easy, comfortable, and most of all enjoyable for her, I'm sure this has taken a toll on them.
The purpose of this page is to hopefully provide the opportunity to provide this family with a wheelchair accessible van they may use for their everyday activities. Currently Laura must be picked up and placed into the family vehicle and the same with the chair. The chair is not your normal wheelchair; it is much heavier than that. Paul and Darlene Glaudemans are doing their very best to accommodate and I have never heard a complaint come from them. I would like to be able to give this to them just to make life a little more enjoyable, and make my cousin just a little more comfortable. I thank you for your consideration and contribution to this family.
Organizer and beneficiary
Sisson Ryan
Organizer
Baltimore, MD
Paul Glaudemans
Beneficiary