January 2023 AMCer

On March 19th, 2021, Jessica and Larry welcomed their beautiful daughter Magnolia Walton into the world. She weighed 5lbs 12oz and was the most beautiful thing they had ever laid their eyes on. 

It was at Magnolia’s 20 week ultrasound, that Jessica and Larry were given life altering news about their sweet girl. Magnolia was diagnosed with Arthrogryposis Multiplex Congenita (AMC). 

Doctors told them that Magnolia may not make it through the pregnancy, and if she did she’d have a poor quality of life and spend the rest of it in a wheelchair unable to care for herself. Abortion was encouraged but for Jessica and Larry, that was never an option. They were going to do anything they could for their sweet girl. 

Magnolia was born affected in all 4 extremities, her neck was hyperextended, she had torticollis, and bilateral clubbed feet. Because of these multiple contractures and abnormalities, Nolies life looks a lot different than others her age. 

When Magnolia was born she was not able to move her trunk or limbs, just her neck and head. She was born at a local hospital, and after spending 2 nights in the NICU there she was transferred to a children’s hospital in Chicago and stayed a couple weeks in their NICU as well. Magnolia mainly worked on feeding with a little help from an NG tube, and worked on getting big and strong so mom and dad could take her home. 

Before Magnolia was even born, her parents searched for the best treatment possible, and that is when they learned about Dr. Feldman and the Paley Institute. 

Magnolias initial appointment with Dr. Feldman was through a zoom call, since the family resides in Illinois.   Dr. Feldman reassured Jessica and Larry that Magnolia did have AMC, and he’d be happy to come up with a plan to treat her if we made the trip down. With high hopes, Jessica and Larry packed up for a trip down to Florida and met with Dr. Feldman and his team. 

During the first visit with Dr. Feldman and his team, Magnolia got new splints for both her hands and her feet, along with a few sessions of intense physical and occupational therapy. It was suggested by Dr. Feldman that Magnolia come down for a while and continue to receive these intense therapies so that she could have the best outcome as time went on. 

When Dr. Feldman was asked by Jessica when they should come back down, his response was “yesterday”.

So, Magnolia and her family headed back home, packed up, and made the trip back down to Florida for 4 months to continue that intensive physical and occupational therapy. Along with those daily hour long therapy sessions, Magnolia had a tenotomy done bilaterally, over 30 castings, and multiple splints made. 

After those 4 months were up, Magnolia and her parents headed back home and continued the therapy there, weekly. As time has gone on, Nolie is learning how to adapt more everyday but still struggles to hit physical milestones. For example, Nolie cannot use her hands to feed herself, crawl, or use her legs and feet to bear weight. 

Magnolias family is now back in Florida, for another 4 months so that Magnolia can have her leg surgeries and learn how to walk! 

Magnolias 1st surgery was January 16th, and everything went great! They were able to straighten out one of her legs and get it in the position needed to start bearing weight. The surgery for her next leg is January 31st, and Jessica and Larry are hoping for the same outcome. Right now, Magnolia is working on healing and recovering. 

After both surgeries are completed, Magnolia will receive daily therapies again to keep those joints moving and get them ready to start standing. Magnolia’s family plans to stay for additional months so that she can learn to walk and get the additional therapy she needs on her hands as well. 

Jessica and Larry’s goal for Magnolia and her treatment at The Paley Institute, is to give her every opportunity to live a normal life. To be able to walk. To use her hands as you and I do. Jessica and Larry never want Magnolia to feel like she is different, or that she is alone because she cannot do the things that other kids can do. 

Helping AMC Families Incorporated is assisting the Walton family with $5000 towards their lodging expenses during their 4 month stay in Florida.