March 2022 AMCer

Landri was diagnosed with Arthrogryposis Multiplex Congenita (AMC) during the 20 week ultrasound, when they recognized her club feet and noticed her arms were locked in extension. She was born via c-section at 39 weeks and immediately taken to the NICU for four days. Upon discharge, Landri’s Mom was instructed to find an AMC specialist. It took five months just to see someone at the Children’s Hospital in Arkansas. Once there, Landri’s Mom was told by the orthopedic surgeon there was nothing that could be done for Landri and that she would never walk.

Landri’s mom started to explore care at children’s hospitals in the surrounding states but continued to receive the same disheartening prognosis or in many cases the doctors had no idea what AMC even was. They tried out a sports specialist in Kansas City for serial casting; however, after five treatments and much pain he felt he was not helping her and said they should find someone else. Looking back on this experience, Landri’s mom says, “It’s terrifying to not be able to find a doctor to treat your child.”

Landri’s mom began to do more AMC research in order to be more knowledgeable about the condition when speaking to doctors. She was incredibly happy to find support on Facebook and was encouraged by other families to take Landri to the Shriner’s Hospital in Philadelphia where they had an AMC specialist, Dr. Van Bosse. Their first visit (when Landri was just 7 months old) brought new hope for her future and mom was assured that Landri would find her own way of doing things over time. Landri left that visit with casts on both legs, a cast on one arm, and a treatment plan in place which required travel from Arkansas to Philly weekly. At 11 months old Landri had her first surgery at Shriners in Philly and spent a week in the PICU. The surgical casts were removed 7 weeks later. Landri received her first pair of AFOs and started a PT/OT schedule back home.

Since then, Landri has had 31 additional procedures at Shriners Philly and many sessions of serial casting in an effort to correct and improve her mobility and independence. All of these trips have required anywhere from 3 days to 5 months of consecutive stays in Philadelphia. Currently, Landri has one arm stuck in flexion, the other arm stuck in extension, one knee stuck in extension, and the other knee has minimal range of motion.

When talking about Landri her mom says, “To know Lan is to love her. The moment I picked her up and we looked at each other I knew my life, my world had changed forever and there was nothing I would not do to help her live her best life. Landri is sweet, sensitive, kind-hearted, befriends everyone she meets, and has never seen or met an animal she didn’t love. She has an adventurous spirit and does not see anyone as ‘disabled.’ She told me ‘God made us all different and that is a good thing.'”

Landri’s mom encourages Lan to find her passion. Landri loves hippo therapy and mom says,”The smile I see on her face when she is riding is one of my greatest joys.” Landri also loves dance class and even went rock climbing.

Walking has been a huge challenge for Landri and her mom said, “Watching her struggle and work so hard, her little face covered in sweat, the pain clearly showing, would cause my heart to swell with pride and hope but, at the same time, it also causes gut wrenching pain over the fact that she has to work 100x harder for things we all take for granted.”

Landri took her first independent steps at 6-years-old. With the aid of a walker, she was able to get around her home well and just uses a power chair for activities outside the home. However, after each surgery Landri’s mom felt they were taking three steps backwards and would have to start all over. Currently, Landri has not been able to walk since her last surgery in early 2021. She is a growing girl and her mom is no longer able to pick her up. They have been unable to get Landri in and out of the bathtub for some time and her wheelchair does not fit into the bathroom so Mom is unable to help Landri safely transfer to the toilet.

Their dream is to have an accessible bathroom. A shower Landri can roll into, a toilet she can get onto herself, and a sink low enough that is made to accommodate her chair. This would be life changing for Landri (and her mom). In addition to creating a better atmosphere for her care, it would allow Landri to gain independence and learn to care for herself. Together, we can help make their dream come true!

Helping AMC Families is thrilled, through the support of our amazing donors, to be able to assist Landri and her family with expenses related to renovating their bathroom! Helping AMC Families will be working directly with their contractor to pay $5000 of the balance due.

In addition to the nonprofit award, the founders of Helping AMC Families (AMC Princess Ana and her family) will be donating stars they receive on Facebook during the month of March to personally contribute up to another $5000 towards the contractor bill. If you would like to help with that effort you can join in over on the AMC Princess Ana – Facebook page and send stars on any livestream or video during the month of March. Deals on stars can be pre-purchased on Facebook’s online stars store at fb.com/star.

You can also help Landri and her mom directly, with the purchase of additional equipment and supply needs for the new bathroom, by donating to their GoFundMe which can be found at https://gofund.me/42a40533