By John Balson @JJBALSON

A BED-BOUND girl whose leg swelled to a massive 150lb has vowed to restart her life after enduring a radical twelve-hour operation to remove the growth

Scroll down for the full story

Videographer / director: JP Steele
Producer: John Balson, James Thorne
Editor: Sonia Estal

 

Jamila Coleman, 27, spent nearly four years watching the world through a window after a rare form of lymphedema caused her leg to balloon to 3ft-wide below the knee.

Despite her condition progressively worsening, insurers refused to cover an operation until earlier this year when surgeons finally removed 120lbs of flesh and fluid.

Now in recovery, Jamila is learning to walk again through rehab and exercise and is determined to forge a new life for herself.

She told Barcroft TV: “I was in bed 24-hours a day, seven-days a week. It was really hard. But like life in general - it's what you make of it. 

"I went through some really dark times but I found reasons to keep going and not give up."

"Sometimes I feel like I need to make up for lost years. But at the same time I was living my life - I was just living differently than everyone else.

“Mostly I’m just appreciating the little things like being able to stand up and go to the sink and wash my hands and wash my hair. It’s awesome. I would go through surgery eight times again to be where I am now.”

Jamila, from Snelville, Georgia, suffers from lymphedema-distichiasis syndrome caused by a mutation in the FOXC gene - which plays a critical role in the formation of tissues and organs.

She inherited the condition from her mother, Geraldine, who had a milder form.

Despite the diagnosis Jamila was an active child and enjoyed playing ultimate frisbee and mini-golf and going to the movies with her friends, until her condition suddenly accelerated.

She said: “My lymphedema really started when I was 18 years old. It hit me pretty hard because I was graduating high school and everyone was dressed up in summer clothes and summer dresses and I was wearing long pants to hide my leg. I was embarrassed."

Eventually her leg became so swollen she was unable to leave her bed at all and had to be cared for by her mother and younger sister Jasmine, 24.

“I wanted help but I couldn’t get it. I couldn’t get disability or social security. The insurance I did have I lost when my dad lost his job. I tried for Medicaid but it kept being denied.

“Being stuck that long can have its challenges. It can be really hard. I did have my dark days. Every second day of the month I was usually pretty depressed because that would mark another month since the last day I walked. 

"I felt empty and angry. I was really confused because I didn’t understand why it was happening to me. 

"But I had to keep going. I had a policy of celebrating every little thing I possibly could, even if it was just getting dressed up to watch concerts like Coldplay at Glastonbury on TV and my friends coming around to have pizza. Anything."

Despite her positive attitude, her condition became so bad - especially when a 19in open wound formed - there was no choice but to operate.

"I would get infection after infection because the skin would break down and it would weep and it was just awful.

“My skin started peeling off and I had such a severe bacterial infection they said I would have died if I waited much longer. It’s a really scary thing to think about.”

It was during an ambulance ride to the hospital that she met ambulance driver Carmen Johnson who fast became a close friend and set up a fundraising campaign to help her.

Carmen told Barcroft TV: “When I first saw her leg I was amazed. I had really never seen anything like that before. It was very, very big. It was basically the width of her bed.

“But she has really amazed me about how strong she is inside. No matter how much pain she's in she can just tough it out.

"She has a personality that captures you as soon as you meet her. First two seconds I met her I fell in love with her and I knew I had to try and help her out."

Eventually Jamila was accepted for Medicaid and underwent a 12-hour debulking operation at the Emory Clinic - which she says was one of the largest operations performed to date there.

She then had a skin graft as well as rehabilitation to help her walk again.

Jamila said: "Life since the surgery has been a lot of learning curves. It has its challenges and sometimes I get frustrated - but it's been exciting. It's been an adventure.

“I have a lot of plans. Number one is I would love to go swimming again. I’m a fish at heart and every summer when I was little I used go swimming. I would also love to drive again, to walk without a walker and just be part of society again.

She has had her first alcoholic drink - a margarita - and even had a tattoo.

"I would like to go on a date, something simple like that," she added.

However, her post-surgery joy was short-lived as her mother died just one month later, aged 62, and was unable to see her daughter taking her first steps.

Jamila said: “My mom was one of the most wonderful human beings you could ever encounter. She was my caregiver and my best friend in the whole world.

“It's sad that she didn't get to see me walk again but she did see me have surgery and make little triumphs like sitting on the edge of the bed. I hope she is proud."

Jamila now plans to work on improving the medical insurance system in America as well as fulfilling her dreams by becoming a youth worker and inspiring young people with her story.

She said: “If you have a purpose in your life and you’re putting other people first and finding a way to serve then that actually makes your life worth living.

“That’s why I always say never give up. Even if you’re in a moment where it sucks and everything around you is just horrible - anything could happen the next moment and turn things around and make the future greater and greater. That’s what life is all about.”