StemCell Therapy

FAIRBANKS Organizers hope a giant fundraiser Saturday will help save the life of a baby.

Six-month-old Quinn Bartholomew has been diagnosed with spinal muscular atrophy (SMA), the No. 1 genetic cause of death ininfants. She is the daughter of lifelong Fairbanksan Brienna Marok-Bartholomew and Jack Bartholomew.

A new drug called Spinraza recently wasapproved by the Federal Drug Administration to combat the condition, but the drug is very expensive. Little Quinn will need at least seven treatments at a cost of $125,000 per dose.

Her insurance will not cover the medication or any expenses pertaining to the procedure, fundraiser organizers said. This means insurance will not pay for the medicine, hospital stay, anesthesia, bloodwork, radiology and more.

So family and friends are reaching out to Fairbanksans for help.

Fairbanksans are responding, as always, with incredible generosity. People can donate and also keep track of Quinns progress on YouCaring.com at http://bit.ly/2wKUOFK. The posts are heart rending.

Spinal muscular atrophy is a genetic disease in which the motor neurons in the spinal cord degenerate, causing muscle weakness. Babies born with Type 1, like Quinn, are very floppy and have trouble swallowing and feeding. Life expectancy is generally less than two years.

The good news is, it appears Quinn is benefitting from the treatments. Her parents posted on the YouCaring site Saturday: We are only two treatments in and already we have seen drastic improvements, not only in Quinns strength, but her personality as well. She has been able to hold her head up for around five seconds on multiple occasions over the last few days. She wakes us up every morning with giggles and gurgling stories.

Her third treatment is Wednesday.

When friends of the family offered to organize fundraisers to help pay for these treatments, the Maroks and Bartholomews were grateful. Now, they are overwhelmed at the outpouring of love and support.

Quinns grandparents are retired teachers Bob and Blanche Marok. They have lived in Alaska for 40 years and in Fairbanks for the past 28 years. They are longtime volunteers in the community for everything from Fairbanks Community Food Bank and hospice to sports activities and youth organizations. Over the years, they served as foster parents for 26 children through Fairbanks Counseling and Adoption. Their three children, Chris, Brienna and Trina, all grew up in Fairbanks.

The generosity of the community has been overwhelming, Bob Maroksaid.

People are always asking us, Why do you live in Fairbanks? he said. This is exactly why. Its just blown us away.

The big fundraiser planned for Saturday is called Quinns Roundup. Everyone is invited to saddle up for an evening of games, raffles and shopping, as everyone rounds up funds for Quinns treatments.

The fundraiser takes place at the Event Center and Lounge, 1288 Sadler Way. Doors open at 2 p.m. The silent auction is 2-7 p.m. and a taco bar opens at 5 p.m. An outcry auction begins at 8 p.m. There will be live music throughout the day, including a performance by Nashville singer Ryan Bexley. The fundraiser will include outside volleyball, vendors, 50/50 raffle and door prizes. Some of the auction items aregift cards, artwork, tickets to NASCARevents, airline tickets, a Hawaiian vacation package, chainsaw, the chance to have a photo booth at your own event, hotel stays and gift baskets.

All proceeds go to Quinn and her family to help pay for medical treatments.

Organizers are recruiting support from vendors, donations of gift certificates, merchandise or services. Contact Krystal Wester at 750-6098 or drop off auction donations at the Chris Marok Allstate Agency, 59 College Road.

Another fundraiser is set for Aug. 25. From 5:30-8:30 p.m., you can Spin for Quinn at Lavelles Taphouse. F&H Fitnessis hosting the event. Its a Spin-athon that includes a live disc jockey, prizes and refreshments.

Reach columnist/community editor Kris Capps at kcapps@newsminer.com. Call her at the office: 459-7546. Follow her on Twitter: @FDNMKris.

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Fairbanks fundraiser benefits baby with genetic disease - Fairbanks Daily News-Miner

This entry was posted on August 15, 2017 at 11:47 am and is filed under Genetic medicine. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed. |