Rainbows for Maggie
Donation protected
In February of 2019, Samuel and Heidi took Maggie for a physical therapy evaluation for what was believed to be a "slight developmental delay." Countless blood tests, orthotics, and hospital visits later, Maggie's motor skills and speech were continuing to decline without explanation. Finally, in late February of 2020, they were given a diagnosis for Maggie: Metachromatic Leukodystrophy (MLD).
MLD is caused by a recessive gene that must be passed down by both parents. The chance of two people having this rare genetic trait is 1 in 10,000. The odds of those two having a child with the double dose of that gene is 1 in 4. MLD recipients lack an enzyme that allows the body to use cellular waste to be made into myelin, the coating on the nerve fibers that make up the white matter of the brain. Without this myelin, the nerves and white matter begin to break down, and the brain cannot adequately send signals to the body. This causes changes starting with weak muscles, leading to spastic muscles, body temperature control issues, and loss of ability to speak, among other challenges. MLD is terminal and the only treatment at this time is symptom management.
The challenges ahead for Samuel and Heidi's family are unimaginable, and many are unknown at this point. Initial plans include a wheelchair for Maggie, house modifications for access and safety, countless trips to MLD specialists out of state, and attempting to maintain a new "normal" for all of their children: Stuart, Will, and Maggie. A normal that is filled with smiles and rainbows.
Our goal in organizing this fund is that Samuel and Heidi don't need to worry about the financial aspects of the above but can focus on loving their kids for every precious second that they can. We are looking to cover the estimated cost of home renovations and expense of medical consultations or clinical trials (to slow progression) outside of Des Moines (hotel, gas, and food).
Maggie loves rainbows and princesses and has eyes that light up when her big smile shines in the room. Any contribution- financial, thoughts and prayers, or wearing rainbows for Maggie and the Larson family- is so greatly appreciated. We will attempt to keep this page updated as much as possible and we appreciate your love. #TeamMaggie
More information on MLD can be found below:
www.mldfoundation.org
MLD is caused by a recessive gene that must be passed down by both parents. The chance of two people having this rare genetic trait is 1 in 10,000. The odds of those two having a child with the double dose of that gene is 1 in 4. MLD recipients lack an enzyme that allows the body to use cellular waste to be made into myelin, the coating on the nerve fibers that make up the white matter of the brain. Without this myelin, the nerves and white matter begin to break down, and the brain cannot adequately send signals to the body. This causes changes starting with weak muscles, leading to spastic muscles, body temperature control issues, and loss of ability to speak, among other challenges. MLD is terminal and the only treatment at this time is symptom management.
The challenges ahead for Samuel and Heidi's family are unimaginable, and many are unknown at this point. Initial plans include a wheelchair for Maggie, house modifications for access and safety, countless trips to MLD specialists out of state, and attempting to maintain a new "normal" for all of their children: Stuart, Will, and Maggie. A normal that is filled with smiles and rainbows.
Our goal in organizing this fund is that Samuel and Heidi don't need to worry about the financial aspects of the above but can focus on loving their kids for every precious second that they can. We are looking to cover the estimated cost of home renovations and expense of medical consultations or clinical trials (to slow progression) outside of Des Moines (hotel, gas, and food).
Maggie loves rainbows and princesses and has eyes that light up when her big smile shines in the room. Any contribution- financial, thoughts and prayers, or wearing rainbows for Maggie and the Larson family- is so greatly appreciated. We will attempt to keep this page updated as much as possible and we appreciate your love. #TeamMaggie
More information on MLD can be found below:
www.mldfoundation.org
Fundraising team: Team Maggie (3)
Maggie’s Team
Organizer
Urbandale, IA
Heidi Larson
Beneficiary
Joanie Hanel
Team member
Emma Torrens-Burton
Team member
