May 2022 AMCer

If you would like to help an AMCer like this one, click here to donate to Helping AMC Families Incorporated

Levi Holcombe

My age: 10 years old

My favorite things to do: building with LEGO, racing siblings in Mario Kart, make trades & play games in Webkinz, read books, swim

Number of siblings: nine

Number of surgeries to date: two

Assistance provided: A portion of the lodging expenses required for an 11-week stay in West Palm Beach, FL for life-changing treatment/surgery with Dr. Feldman

Temporary relocation
to West Palm Beach, FL

The Holcombe family is from New Braunfels, Texas. Jeff and Lisa have been married 30 years and have 10 children (four adopted from China). Levi is one of those four children and has Arthrogryposis Multiplex Congenita (along with two of his sisters!). Jeff and Lisa have had Levi since he was three and a half years old. He was born with Arthrogryposis type Amyoplasia and is affected in all four limbs. Despite his physical challenges, they are constantly amazed at how incredibly smart he is, his diligence when accomplishing tasks, and his ability to think outside the box.

The Holcombe family’s AMC journey began when their oldest daughter was volunteering in China for a non-government orphanage and worked with Levi in the preschool program there. Shortly thereafter, they saw Levi’s picture come up on an agency’s waiting child list so they asked if he was still waiting for a family. After much prayer and research into his medical needs, they asked if they could be matched with Levi and officially started the adoption process to bring him into their family. That was in 2014 and in August 2015, Levi came home.

From the very beginning, they knew he would walk one day and have always held onto that hope. When Levi was a year old, he had surgery to correct his club feet through New Day Foster Home in China. Through New Day and his foster parents in China, Levi received loving care from just a few months of age through his adoption at three and a half. Levi initially got around by scooting on his bottom or hopping. He was actually quite fast!

After he joined the Holcombe family, they consulted with doctors and therapists at Shriners Hospital for Children in Houston because the wait list to see the lowers doctor at the more frequented Shriners Hospital for Children in Philadelphia was two years long. With orthotics, Levi began working on standing and taking a few steps with a walker. He then received hand surgery through Shriners to separate two fingers that were fused together at birth and move his thumb to a more optimal position. By age five, Levi learned to stand and walk on his knees. He has continued to amaze his family by just how fast he is and how well he is able to move his body! He has become very independent moving this way and with some intensive occupational therapy, he is now able to dress himself, potty alone, brush his teeth, and more. His parents had wondered if he would be able to do many of these things when they first entered the world of Arthrogryposis. Now, they testify to the fact that AMC kiddos are amazing, accomplishing things most would complain about, and that their stories are filled with hope.

Jeff and Lisa found out about Dr. Feldman and The Paley Institute through other AMC families as they continued to research how to best help Levi. In 2021, their daughter’s orthopedic needs were moved to being treated at Paley after their foot doctor, Dr. Dobbs, moved from St. Louis, MO to West Palm beach, FL to join the Paley team. The Holcombe’s were very excited for this change as now all the experts for their children’s orthopedic needs were all in one place!

Last summer Levi traveled along for one of his sisters’ many trips and had a consult with Dr. Feldman. Until that consult, they never felt peace with the suggested knee surgeries, as they would only slowly increase his knee flection over time and growth. Since walking on his knees is Levi’s main method of getting around, his knees are constantly being contracted and those other treatment plans were not ideal for his long-term mobility. After meeting with the Paley team, their hope for Levi being able to finally walk was reignited and they are SO excited to watch his walking miracle unfold as Dr. Feldman is scheduled to perform major surgery on both legs, one at a time, to help loosen the contractures in Levi’s knees so he will be able to walk in June 2022.

Levi’s treatment plan requires the Holcombe family to temporarily relocate to Florida for 11 weeks to get through the surgeries and daily therapy. A huge undertaking for such a large family but Levi’s siblings are his best friends, so they will be vital to his recovery. Helping AMC Families is thrilled, through the support of our amazing donors, to be able to assist Levi’s family with their expenses. The family will be using their $5000 award to cover a portion of the lodging expenses they will face while in Florida. They have been waiting a long time to be able to do this for Levi so they are incredibly thankful to the donors who made this award possible.

Flash Forward to 2023!

An update from Levi’s parents

Levi had double leg surgery in June, each surgery was separate and two weeks apart with Dr Feldman at the Paley Institute. Our family moved to Florida for the summer for Levi’s surgeries and intensive physical therapies. Helping AMC Families gave us the means to help with our accommodations while in Florida for almost 3 months. 

Levi used to walk on his knees prior to the surgery but now he walks on his feet! He took off with walking once we came home in August. Now he walks everywhere! He wears KAFO braces on his legs to help keep his legs straight, and has plenty of free brace time to make sure his legs are moving and bending. He’s starting to walk with his braces “unlocked” so that he will be able to move to the shorter AFO brace hopefully soon. 

While all Levi’s physical strides are huge accomplishments, his confidence, personality and overall well being have flourished after his treatment in Florida. We’re so thankful for all the ways he’s grown! 

If you would like to help an AMCer like Levi,
click here to donate to Helping AMC Families Incorporated

Nana : Would you rather be rich or kind?

Ana : Kind

Nana : Why?

Ana : Because kind people do beautiful things.

– AMC Princess Ana & Nana