Patient Stories: Cordelia C

Cordelia is an amazingly smart, happy, intelligent, beautiful little four year old who happens to have Down Syndrome. During our pregnancy we found that there was a possibility that our baby had Down Syndrome. It wasn’t confirmed until Cordelia’s arrival; it was less than 24 hours after giving birth that we would hear those words “Your daughter has Trisomy 21, or Down Syndrome.”

Cordelia was also born with two holes in her heart - called an Atrial Septal Defects (ASD) and Ventricular Septal Defect (VSD). Her heart was completely repaired at four months old. Since then Cordelia has had multiple surgeries and diagnoses; however, none of this has stopped her from hitting her milestones and growing into the independent toddler that she is today!

We were first introduced to Dankmeyer when Cordelia was around 1 ½ years old by her physical therapist, Havala McKinney, PT, DPT, MSPT, PCS, CEIM (pictured above, right, with Cordelia in the gym.) Havala was Cordelia’s physical therapist starting at just one month old through the Infants and Toddlers program in the Baltimore County school system. It was thought that the Sure Step orthoses would help Cordelia gain the strength needed in her ankles to support her in walking independently. So, I set the appointment.

Jamie (Dean, Patient Services Representative) greeted us when we came into the office for the first time and Jed (Newhardt, CPO) guided us back to the “big” room where Cordelia was measured for her first pair of Sure Step braces. Jed has the patience of a saint. He never complained about Cordelia not sitting still. In fact, he would crawl around on the floor with her, working with her, watching her positioning and measuring her feet and ankles.

At 22 months old, just one month after she was the flower girl in her cousin’s wedding, Cordelia took her first steps. She was off and running. There was nothing stopping her now; well, maybe a baby gate here and there.

Cordelia has worn two different types of braces over the years. She has had two pairs of Sure Step braces and one pair of DAFO #4’s (an example in yellow, above.) We are currently waiting on a new pair of Sure Step braces to arrive. When Cordelia doesn’t wear her braces I can definitely notice a difference in her positioning when walking. I truly feel that the braces have helped with the straightening of Cordelia’s feet (she tends to walk pigeon-toed) as well as stopped her from pushing/flexing her knees back.

I am truly grateful for Havala sending us to Dankmeyer and for the amazing experiences that we have had since. The entire office is amazing!! I feel like they listen to our concerns with Cordelia; their willingness to work with Cordelia’s therapist is like nothing I have ever seen.

Cordelia is currently working towards and meeting goals within the school system. She is an amazing climber on the playground and has no fear when doing so. If she falls she gets right back up and attempts to do the obstacle all over again. There is nothing that will ever hold Cordelia back. This is her life; this is her normal and she will accomplish anything that she is asked to do and wants to do.

Down Syndrome does not limit her.

Her disABILITY is beautiful.

I cannot wait to see what she will accomplish next. 

- Written by Angie White, Cordelia's mom

Cordelia with her mom, Angie White.

Patient Stories: Joe Maese

Joe's Profile:

Joe Maese (pronounced MY-ESSAY) is originally from Phoenix, Arizona. He was drafted by the Baltimore Ravens in the 6th round in 2001. Joe continued his career with the Detroit Lions in 2006 and played Baltimore Arena Football in 2007. 

In 2010, Joe became a career firefighter/EMT.

Currently, Joe runs and operates 59 Athletics in Owings Mills, Maryland, where he trains high school and college student athletes and fitness/bodybuilding competitors.

Joe's Story:

When asked if deciding to have an amputation was difficult, Joe's answer is "Absolutely, and here's why: When what you are left with after an accident is causing you tremendous difficulty, many impossibilities, long-term infections, and the destruction of any good tissue or bone that is left, an amputation is not only a viable option, it can be a thriving alternative."

After four hospitals and seven doctor's opinions, Joe was finally introduced to Dr. Janet Conway, Advanced Orthopeadist and Foot Specialist. When Joe woke up from surgery and spoke to his doctor, she told him he definitely made the right decision in choosing to have his amputation. It had been a long road. Joe had fourteen surgeries in seven months and had enough of feeling like a hamster on a wheel. He decided the only way to stop the continual infections from growing further up his leg was to amputate and move forward. Dr. Conway's expertise and opinion was an integral part of Joe's decision making.

Last week marked five months since Joe's below-knee amputation. Joe feels that once his amputation wound healed, he could not have been paired with a better person and organization than Mark Hopkins (CPO, PT, MBA) and his team at Dankmeyer, Inc. Joe adds that from the start, Mark and his team recognized his individual, personal needs and continue to strive to get him the equipment that he needs in order to live his life to the fullest extent of his capabilities - and to not be held back by a prosthesis and equipment that does not work for him.

Joe attributes his successful transition to a prosthetic leg to the way he was raised and the many challenges and adversities he faced in his career choices as a pro football player and a firefighter. He adds that all of those things combined instilled in him the wherewithall to rise to the challenge that being an amputee requires and has given him continual drive and success moving forward.

　

 

Patient Stories: Patients Attend Hill Days

Kelly Miller at Amputee Coalition's Hill Days

Kelly Miller and Jeanne Smith, Patient Services Coordinator attended The Amputee Coalition's Hill Days in Washington DC on Tuesday, April 25th and Wednesday, April 26th.  Along with other Dankmeyer patients, amputees from all over the country came together to meet with elected officials to discuss issues affecting the limb loss community: to include insurance fairness for all amputees, healthcare reform, and support for research program funding. Among other attendees was a family of three  generations, a young four year old amputee and his mother and his grandfather, all dedicated to advocating for insurance fairness for ALL persons affected with limb loss.  

Many thanks to all of the Senators, Congressman and their staff for meeting with the 2017 Hill Days participants.  A special thank you to the following Senators, Congressman and staff who took time to met with Kelly and Jeanne:

  • Senator Chris Van Hollen and David Radcliffe, Department of Defense Fellow
  • Dvora Lovinger, Congressman John Sarbanes’ Deputy Chief of Staff
  • Alexandra Menardy, MPH, Senator Benjamin Cardin’s Legislative Correspondent, along with Health Fellow, Arnold Solamillos 

In addition, we thank Congressman Brian Mast of Florida, Veteran and bilateral amputee, for hosting a wrap up discussion and reception. 

For more about the Amputee Coalition and the annual Hill Days, click here.

Patient Stories: Jeremy Funk

Levi and I met in June of 2015 at Fidos for Freedom, a service-dog training organization in Laurel, Maryland.  (Fidos trains dogs for people with low mobility, for people with impaired hearing, and for veterans with PTSD.)  Levi is a three-year-old red-fox Labrador Retriever. It felt as though he chose me, because before we were matched with each other, even when he was working with other clients, he would watch me from across the room.  As we work together, he is learning to help me by fetching items I've dropped, and we are working to see if he could help me with my balance as I walk.  He also knows how to brace to help me stand up when I fall.  I work as a copy editor at home, and one of my favorite moments of the day happens as my computer warms up in the morning; Levi hops up on the futon with me and tries to lick my face as I pet him.  Eventually, he lies down and puts his head in my lap: it's a great way to start my work day.  Levi is a wonderful partner. 

Here are some pictures of Levi at work, at rest, and at play with his housemate Emma.

If you are interested in more information about Fidos for Freedom, you can click here.

If you are interested in more information about Labrador Retrievers, you can click here.

 

Patient Stories: ERIC FLYNN

Eric Flynn is a very active eleven year old, like most boys his age. This sixth grader loves to fish, play baseball, and ski - as just a few of his athletic endeavours.   Eric has previously shared pictures of some of his legs as shown here - both clean and after a muddy event!  The mud can be hosed off, leaving Eric ready for the next sporting event. And what will that be?

 

It won't be long before it is spring, and spring training starts and baseball will be on everyone's mind.  But as recently as the beginning of February, Eric was still thinking about skiing.  Let's take a look at his skis.  Last year, Eric's skis started as standard size appropriate skis and bindings.  Eric's parents, Eric Sr. and Darnell, purchased "feet" which Dankmeyer then modified. Adapters for the prostheses were installed in order to connect the prostheses to the skis.  

You can see Eric here trying on the finished product before hitting the slopes. Last year Eric was able to ski using outriggers.  This year, he has progressed to skiing with standard poles.  This video shows how well Eric is negotiating the terrain. Nice Job, Eric!  Looks like you are having fun!