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View Winners → Monrovia Firefighters Raise Funds to Assist 2-Year-Old Battling Rare Disease
Community Aug 17, 2017
-Photo by Terry Miller
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By Susan Motander
Members of the Monrovia Fire and Rescue are helping to raise funds to aid Marian McGlockin, a 2-year-old with Nimann-Pick, Type C (NPC), a disease that is often referred to as childhood Alzheimer’s. As of now the toddler has been involved in experimental treatment of the normally fatal disorder, and the family has started a GoFundMe account to help offset the cost of her treatment and care.
The treatment is a clinical trial called VTS 270 – a mixture of 2-hydroxypropyl-B-cyclodextrins with a specific compositional fingerprint that has been evaluated in preclinical and clinical NPC studies at numerous academic labs and at the National Institute of Health (NIH).
Cyclodextrins is a family of doughnut-shaped sugar molecules that is used to treat NPC, which is a lethal and inherited disease that prevents the body from metabolizing cholesterol and other lipids. The resulting accumulation of fats harms the brain, liver and the lungs. It is almost always the brain damage that kills, often by the time children reach their teens.
Currently there is no cure for this rare disease, but Marian is the youngest person undergoing an experimental treatment in the effort to find the cure. Part of that treatment involves trips every other week to the Children’s Hospital for a spinal tap. Her care and treatment are costly.
On Monday, the firefighters took the pucker up challenge and ate lemons challenging three other people to do so as well, all while contributing funds to Marion’s cure.
If sucking a lemon is not your cup of tea, t-shirts supporting her are selling at https://www.dolovelive.com/product/hope-marian-tee/.
A direct donation can also be made at https://www.hopeformarian.org/donate.
To learn more about NPC and Marian check out her own page at https://www.hopeformarian.org/.
To read more about Marian, check the Monrovia Weekly article that ran in July in this publication: http://www.monroviaweekly.com/current-news/monrovia-toddler-facing-childhood-alzheimers-youngest-patient-world/).
