WOW well this is an INCREDIBLE story!!!
Everyone meet Ella, my amazing #childwarrior number 14. Ella is just 11 years old and has had 44 operations in her life! This girl is literally a ray of sunshine, she walks in the room and the whole room lights up. She literally brightens my whole day!! She has recently won awards on Pride of Britain and she more than deserves it!!
Here is her backstory:
Ella was born over 4 weeks early. After suffering from sniffles, a hernia and a drop in weight, she was sent to the hospital, where they noticed a heart murmur, suspected fluid on her lungs and poor circulation. Tests showed that Ella had a rare condition called congenital nephrotic syndrome. CNS is a rare genetic illness causing kidney failure, which we were told is incurable and would require a kidney transplant when she gets bigger.
Ella struggled to gain weight and would constantly catch chest infections or other bugs, resulting in long hospital stays. She had infusions everyday giving her protein through a central line in her chest. Although these tubes gave her treatment to keep her alive, they caused infections, which would make her seriously poorly as these tubes went into her heart.
At 18 months old, Ella had both her kidneys removed as they weren’t working and were causing her more problems staying in. As she had no kidneys, she was dependant on dialysis. She also needed injections every 12hrs to thin her blood, as she was also born with factor 12 (highest level) deficiency which is a blood clotting disorder. Despite these injections, Ella still suffered blood clots in her lines stopping them working and also causing strokes.
As Ella had a low immune system, her chest infections would sometimes turn into pneumonia and result in stays in ICU on life support again, or in HDU.
Just 2 weeks after her 3rd birthday, Ella had a kidney transplant donated by her Daddy. Unfortunately, just hours after the procedure the kidney clotted and Ella became seriously unwell. She was rushed back to theatre and the kidney had to be removed. She contracted sepsis, and then she had to go back on dialysis, as her peritoneum started leaking. This caused her transplant scar (which ran from her chest to groin), to become fully open to the point her belly button was on her side. To repair this they had to change her dialysis to heamo-dialysis and start her on VAC therapy (this is like a suction dressing), but had to go to theatre every other day to gradually help bring the scar back together. This took over a month going theatre 3 times a week.
After nearly 4 months in hospital, Ella came home, but had to carry on going to hospital every other day for dialysis. Just a couple of weeks later, Ella suffered big stroke, where she had to be put in coma and given paralysing medicine. She had suffered multiple bleeds on her brain. She took a while to recover from this and had to learn to sit back up, talk, eat etc.
Although she was 3 years old, Ella still couldn’t stand or walk, she had renal bond disease and hyper parathyroids, so calcium leaked out of her bones. As Ella had so many operations on her tummy, the inside was a mess with lots of scar tissue building up and her hernia was getting worse. It got so bad she needed emergency operation to remove some of her intestines and insert a wire mesh wall inside her, as her abdominal wall didn’t exist.
1 year after the failed transplant, doctors carried out tests to see if they could reattempt the transplant, as this was Ella’s only option. Unfortunately, the tests showed that all of Ella’s arteries had threaded off into tiny veins which were not big enough to plumb a kidney to.
We were told Ella only had as long as this line would last, and we were handed a letter mentioning hospices and palliative care. Luckily her consultant didn’t give up and got in touch with Great Ormond St Hospital.
Luckily after very intensive tests at GOSH, Ella could have a transplant. Ella’s Nanna donated her kidney. This wasn’t without its dramas, it was 10hrs long and like first time she got rushed back into theatre but luckily came back out with a working kidney. After her transplant, Ella lost all her hair, which Doctors said was a combination of the medication, stress and trauma she had been through. Luckily it has all grown back!
On 9th may this year, Ella will celebrate 5 years since her kidney transplant! Ella takes several medicines; the steroids she takes damaged her pancreas, giving her diabetes so she also needs lots of injections and blood-sugar checks every day, but life is so much better post transplant. The strokes have left her with learning difficulties, and the operations have left her with scars, but scars show how brave you have been, and after 44 operations, she definitely has been. She has learnt to stand and walk, although she still has mobility issues, she does her best. She has helped raise money for Manchester Children’s Hospital by completing lots of mini-marathons, with the Great Run Company. She also makes cards for children in hospital to make them smile, and in October 2018 she won The Pride of Britain Child of Courage Award.
She also won The Pride of Sport in 2017. She is definitely a strong and determined girl and us makes us proud every day.
FOLLOW ELLA ON INSTAGRAM @ellachadwick_zebedeemodel