Help save Marley's Leg



Marley's journey to walk!!!

Our story

My husband and I waited several years to get pregnant. We were just about to be referred to the fertility clinic and then we got the greatest surprise, I was pregnant. I completed the 12-16 week testing and came back clear for abnormalities.

At our 18-20 week ultrasound we went to discover the gender, not thinking there could be anything wrong. We found out that we were having a girl J, which is what we hoped for.

We then received a message from the doctor stating he wanted to see us as there were some concerns re: ultrasound. We were told that Marley had multiple things wrong with her. We met with the Genetic team and OBGYN, and completed another ultrasound. We were aware that she had clubbed feet, however were surprised to learn that her fibula was shorter than the other.  Of course, another problem, we felt that we couldn’t catch a break. The doctors told us that there was still a chance the bone could grow.  They also said that Marley might be born missing some toes due to her having a short fibula. We went through many more ultrasounds, however never could get an image of her leg, so we had no choice but to wait the long 18 ½ weeks to know what was wrong with our daughter.

Fast forward to Marley’s delivery. Marley was breach so I had to have a C-section. All I could focus on was “does she have all her toes”?  I know every parent says this when the baby comes out, but this took on a whole different meaning for me. Marley was born with all her toes but her legs looked worse than just clubbed feet.

Marley was placed in the NICU due to her abnormalities and jaundice.  At this point we found out that Marley was actually missing her tibia.

Marley was born with Tibia Hemimelia; she is literally 1 IN A MILLION. They explained to us that her bone could still grow and/or ossify (meaning turn into bone or tissue). There we were again, having to wait and see. We were told the options for this condition were to amputate or leg lengthening, if there was some bone to work with. We couldn’t believe that we might have to make the choice to amputate our baby’s leg. In our hearts we knew we couldn’t do this. The orthopedic surgeon suggested that we look at the “Paley Institute” website as it would give us lots of information about her condition. They were still unsure what the problems with her other leg were but believed some surgeries would fix it. At this point we know our daughter won’t walk unless she has surgery, amputation or reconstruction.

In Canada they are unable to do the surgery that Marley needs and we have to travel to Florida to save her leg.  Dr. Paley is world-renowned and is the best in the business of reconstructive surgery and limb lengthening. Dr. Paley is the man that has dedicated his entire career to change children’s lives and to perfect the surgeries to save children limbs. Dr. Paley is the man who can give our daughter the chance to walk, and we are determined to have the surgery done in his care. If your interested in learn more about this condition and the work he does, the website is www.paleyinstitute.org

Dr. Paley has determined that Marley has Tibia Hemimelia Type 5 and Fibula Hemimelia of the other leg.  Dr. Paley said that this is very rare to have both these conditions. We flew to West Palm Beach to meet with him and his team. Dr. Paley said that he would do both surgeries on both legs. SHE WOULD START TO WALK RIGHT AWAY!!!

We are currently applying for funding by the government to pay for her surgeries. We are in need of help with other medical cost that is not covered by OHIP. We face relocating to Florida for several months for surgery and rehabilitation, physiotherapy costs which is up to $33, 000, loss of wages, cost of travel. We also been warned about complications that OHIP does not cover, and that could range from $12,000 -$35, 000.

So our little girl will be going through intense surgeries throughout her childhood. We believe this is the only option. And that we must attempt this to give her the very best care we can.

Even though we are hoping the surgery is covered, they could deny us which then could be a significant amount of money. If it is not covered surgery is $635000. We need your help, any donations are very much appreciated.

 

Thank You!!!!