A Mother's Love and Perspective on a Rare Condition

I am a regular person who tries to schedule my life plans. I finished my degree and was off to start building my career. I was also aware my clock was ticking and preferred to have my first child at a younger age.

Early 2015, I found out I was pregnant and welcomed the idea of being a mom. I did everything I was supposed to during pregnancy. My tests results and ultrasound were all good to expect my first child; a healthy, bouncing baby boy we named Rafael.

In the fall of 2015, my world stood still when I saw my little one for the first time. I noticed his leg before I even took a good look at him. Something was wrong and I didn’t know what. I had a million questions and couldn’t wait for the answers. The doctors told us that Rafael was born with a very rare condition called Tibial Hemimelia (TH), luckily it affected only his right leg.

Wow! I thought.

My first child was born with a condition so rare it affects only one in a million babies worldwide.

On the plus side, Rafael was quite handsome and he was blessed with a generous package; the nurses jokingly said he would be quite popular with the ladies.

The immediate challenge was - How do we fix his leg?

The hospital’s entire orthopaedic department and consultants came to see Rafael. None of them had ever seen the condition. Unfortunately, their recommendation was amputation.

How does a mom, contemplate cutting off her child’s leg? Not.

After extensive research, we found a pioneer surgeon based in the US who also believes there ought to be a better way than amputation to treat such conditions. Dr Dror Paley has developed treatment methodologies that correct Tibial Hemimelia (TH), via a series of surgeries coupled with bone lengthening with impressive results.

We immediately put some money together and secured an appointment for Rafael. Dr Paley did a thorough examination and gave us some good news. Rafael’s case was actually mild in comparison to others he had treated and he could definitely gain close to full functionality of his leg.

We were ecstatic until we heard the cost of the proposed three surgeries Rafael would need over a number of years as he grew. It was way more than we could afford but we couldn’t let that stop us. We needed help and had to find it!

Now I’m a mom on a campaign to save my baby’s leg and hopefully bring awareness of TH for children as rare as Rafael.

Rafael is now two years old and he’s the joy of my life. He’s extremely smart and tech-savvy; it’s like he was tapping and swiping while he was in my womb. Despite his condition, he finds a way to move around and climbs everything he can.

This challenge has made me stronger and with God's grace and help from the human family, we will win!

SAVING RAFAEL"S LEG CAMPAIGN

Please help us in any way you can and share our story.

DONATE HERE