The Unstoppable Alyssa – A Conversation with the Mom of a Toddler with Limb Loss

For anyone who follows Progressive O&P on social media you have likely seen us post about 3-year old Alyssa on a regular basis. Maybe you saw her climb a giant set of stairs at the Bronx Zoo on our Facebook Page or dancing in the Progressive offices with her twin sister, Emily on our YouTube Channel.

What you may not know is that Alyssa is a little girl who is determined to conquer the world even at three years old.

A Diagnosis of Tibial Hemimelia

Alyssa was born with an extremely rare condition, tibial hemimelia, a deformity, with partial or total absence of the tibia.  As is the case with Alyssa, the disease most commonly affects the right leg, although it is unknown why this is. About 1 in one million babies a year are born with tibial hemimelia often with few options for reconstruction and amputation as the most likely outcome. In Alyssa’s case, the amputation was above the knee at the age of 1.

We had the opportunity to catch up with Alyssa’s Mom, Monica, a busy mother of twins who works full-time and has a long commute each day. Monica recently made time for our chat during her evening commute home in the car.

Our sense of Alyssa is that she wants to be independent. How do you balance allowing Alyssa to be independent with protecting her?

Even before her amputation at the age of one, Alyssa was determined. At six months old she wanted to get up and start moving. Even though only one of her legs was strong enough to support her she found a way; she would get up using a toy to help stabilize herself. At six months old! That’s Alyssa. We try to let her do her own thing, but we are always close by if she needs help. And her twin sister, Emily is always close-by too.

What is her relationship like with her twin sister, Emily?

I think Emily sensed there was something different about Alyssa and she would always look after her. As the big sister by one minute, Emily still watches over her. As close as the girls are, I can see Alyssa branching out from Emily and trying to be independent. Alyssa sees Emily do something like climb a jungle gym or a big set of stairs and she wants to do the same thing. I don’t think it occurs to her that she CAN’T do it. She finds her way of working it out.

How important is it that Alyssa has the right prosthetist?

It is everything. After Alyssa’s surgery, the hospital we were in had a prosthetic company located right inside the building, and our surgeon recommended we go there.  It was not a great experience, the equipment the prosthetist put her in just didn’t fit. She was so tiny, and we kept saying, “there has to be a way to fit her correctly”!   The prosthetist essentially told them this was the best he could do.

My husband and I couldn’t believe there was no prosthetic leg to fit Alyssa. And frankly, we felt that the prosthetist should have kept working to find a solution instead of giving up. We were relying on him and his expertise. We kept saying to each other that Alyssa can’t be the only kid in the world with this issue.  After asking around for referrals to find a new prosthetist, some friends in the Physical Therapy word recommended Progressive O&P.

You must know how fond everyone at Progressive O&P is of Alyssa, Emily, and your entire family. Tell me about your relationship with Progressive?

It has become like a partnership and a friendship. I text Abe almost daily with updates on Alyssa’s progress. When I first came to Progressive, the team there made it their business to figure out how to find Alyssa the prosthetic the leg and foot that would let her do all the things her sister can do. They were not going to stop trying until they found the right fit for my daughter. And they never stop being there for us. Recently on a Friday, of course, we were at a baseball field, and Alyssa was hopping around. Alyssa likes to hop a lot. After a while, she walked over to me, and I saw her prosthetic foot came off! This was Friday night at 5 pm, and I called Abe, and he fixed it, no hesitation, no “sorry I can’t help you call me Monday.” I can always reach the team at Progressive no matter what time of day or night.

Alyssa’s ability to navigate the world comes from having a prosthesis that fits her well. Just as a child outgrows their shoes and their clothes as they become taller and gain weight, it is the same for children using prosthetic devices. I don’t think people realize Alyssa is always outgrowing her prosthesis and we are continually having it adjusted.

3 Helpful Tips For Finding a Pediatric Prosthetist

Monica has the following tips out there for any parent who finds themselves in the situation she did two years ago and need to find a prosthetist for their child.

  1. Interview More Than One Prosthetist. Push your surgeon to suggest more than one prosthetist. In Monica’s case, her surgeon gave her a 6-page list of Physical Therapists to interview and only one prosthetist. And if your surgeon has no other suggestions start to ask around with your network and look for reviews online.
  2. Move On If You’re Not Satisfied. If you are not satisfied with the prosthetist you have selected, move on. Not every prosthetist/patient relationship is the right fit there are a lot of variables that go into the selection process including credentials, personality, access to the latest technology, location and convenience, experience, and bedside manner.
  3. 3. Social Media. Although Monica has not had time to utilize social media, she knows she will in the future. As Alyssa gets older, Monica plans to look to parents who have come before her for some insight.

When asked what Monica sees in Alyssa’s future she says she pictures her doing everything as she does now, determined and not letting anyone hold her back.

“She has accomplished so much in the two years since her amputation. Nothing is going to stop her from anything she wants to do. I can see her becoming a lawyer”.