If you know Arlo, you know that he is a special kid. He has the best smile and he loves interacting with everyone. He is curious about the world and loves learning. Arlo is happy and full of joy. His favorite things are cars, (he calls them beep-beeps) balls, music and farm animals. In almost every way Arlo is a typical two and half year old. There is one big thing that separates Arlo from his peers. Due to medical negligence during his birth Arlo suffered a brain injury called hypoxic-ischemic encephalopathy, or HIE. HIE is caused when a brain is deprived of oxygen for too long. This brain injury led to additional diagnosis including cerebral palsy and epilepsy.

Arlo has been in physical therapy since he was four months old and occupational therapy since he was six months. Arlo has proven to be a very hard worker and shows determination in every physical therapy session. He has met many goals but he is still very delayed in his gross motor development. Despite his hard work and determination, because of his cerebral palsy, the muscles in Arlo’s legs are very tight, and his therapist believes that this increased muscle tone is what’s holding him back from achieving his gross motor goals.

Luckily Arlo has been approved for a life changing surgery called selective dorsal rhizotomy at St. Louis Children’s Hospital. This specialized neurosurgery will locate and cut the nerves in Arlo’s spine that are over-firing, causing the increased tone in his legs. Compared to other treatment options this surgery will offer Arlo lifetime relief from extremely stiff and painful legs. We are very hopeful that this surgery will help Arlo learn to transition into sitting and standing on his own and even learn to walk with some level of assistance (either a walker or hand crutches.) But, the level of success that we will see from this surgery is based on how much physical therapy is provided to Arlo following the surgery. The hospital recommends physical therapy four-five days a week for six months. We will also be completing a two week physical therapy intensive to take advantage of the time post surgery.

As you can imagine the medical costs for this surgery and the follow up therapies is vast. Over the last two years we have fought and fought for Medicaid coverage for Arlo but continue to get denied. Our private insurance charges $50 per therapy session, which adds up quickly with four-five sessions per week for six months. Our physical therapy intensive is not covered at all by insurance. Due to Arlo’s needs Libbie has had to leave the work force, so these mounting medical expenses will put a considerable strain on our family.

We are now reaching out to our community for help. Every small amount will help and we are grateful for our family and friends coming together and lifting us up to help give Arlo this life long gift and fulfill his full potential.

Below we have listed the breakdown in costs:

Surgery and hospital costs-$3,000

Travel and lodging costs for 2.5 weeks in St. Louis: $3,363

Physical therapy costs for six months: $6,000

Two week physical therapy intensive: $4,800

Travel and lodging for physical therapy intensive: $1,300

Total Cost: $18,470