Transportation Expenses for Reed’s Medical Care

Hi, my name is Laura and I am working on a fundraiser to support my nephew Reed, who is fighting a disease called SMA. He and his family need additional support as they battle the financial hardships of continually traveling long distances for life saving medical treatment. Reed recently had spinal and knee surgeries and he requires regular treatments at a specialized hospital. The financial hardships are due to medical leave from work, a hefty monthly payment for an accessible van, and all other expenses required to leave home for extended periods of time such as gas, food, hotel rooms, childcare, etc.

Brittany and Reed

My sister, Brittany(Reed’s mother) is a fighter. She will do whatever on this earth that she can to insure that Reed gets every treatment recommended by his doctor, goes to every physical therapy appointment, and any medical care that might give him a fighting chance at a healthy and normal life. He has already made incredible strides towards his strength and health and that is largely due to her persistence and dedication to his care (His very expensive, time consuming care). I chose $10,800 as a goal as that would cover his accessible van payments for 12 months. Please help her and their family by aiding in the financial means that it takes to win this fight Reed Can Beat SMA

Continue reading more information on Reed and his medical expenses ⬇️

Reed Reuter is a 9 year old boy from International Falls, MN. Reed enjoys riding his dirt bike, swimming, spending time with his cousins and playing video games with his friends. At 16 months old (2015), Reed was diagnosed with Spinal Muscular Atrophy (SMA), a genetic muscle wasting disease. This neuromuscular disease requires specialized care and treatments that are not offered at a general medical facility.

Reed September 2015

Since his diagnosis in 2015, Reed and his mom, Brittany have made nearly 100 trips (averaging 13 per year) to Gillette Children’s in St. Paul, MN. 291 miles - one way, Gillette is the closest facility offering the specialized care and groundbreaking treatments available for managing symptoms of SMA. The need for medical intervention and monitoring is lifelong with SMA. Reed has a care team of 9+ specialists and therapists who see him at least 2 times per year, often 3-4 times, every 16 weeks he receives a treatment via spinal injection, every 12 weeks his magnetic spinal rods are lengthened and most recently, in July, Reed was accepted to join a promising clinical trial that also requires he travel to Gillette every 28 days (for 1 year).

Every trip to St. Paul results is days taken off from work, miles on the odometer, the expense of gas, food and hotel stay and of course time dedicated to making the trek and hours spent in the hospital.

After dealing with multiple mechanical issues with Reed’s first accessible (preowned) van and no shop within 300 miles to repair the uniquely modified vehicle, the purchasing of a new safe, reliable and accessible vehicle became a high priority.

In November 2022, Reed’s mom Brittany purchased a 2022 Toyota Sienna, the first all wheel drive option for an accessible vehicle making it perfect for Minnesota winter roads. Like most adaptive equipment, conversion vehicles come with a hefty price tag. Reed’s medical waiver funding helped to purchase the necessary custom equipment and modifications = half of the $83,000 total ticket price. Brittany financed the remaining $43,000, for a monthly payment of $650. To insure the van and its custom parts costs an additional $250 each month. $900/month to own and insure this accessible ride for Reed.

One month after purchasing the van, (December 2022) Reed underwent 2 major surgeries. A spine surgery to stop and hopefully correct his severe scoliosis, as well as a knee surgery to correct contractures in both of his knees. It was a long recovery spent at home that resulted in Brittany taking a much longer leave from work to be home with and care for Reed.

In April, Reed was scheduled to have another, much less invasive or extensive surgery to remove his tonsils and adenoids. On the way to Reed’s surgery, Brittany broke her foot, as she was stepping out of the vehicle, resulting in an even longer leave from work.

The purpose for this campaign, is to help alleviate some of the financial strain caused by frequent medical travel, the high cost of adaptive transportation and time spent unable to work while traveling too and from medical appointments as well as during surgery and injury recoveries for Reed and his mom, Brittany.

You can follow Reed’s journey on social media by searching “Reed CAN beat SMA” or at www.ReedCAN.com.

#ReedCAN

Event Schedule

Spinraza -every 16 weeks (lifetime)

Spinal Rod Lengthening -every 12 weeks (4 years)

Clinical Trial- every 28 days (1 year)

Neuroclinic with 9+ specialists- 2+ times per year