Climbing Kilimanjaro For Ella

On June 3rd 2020 Ella Lewis was born at 28 weeks. A big shock to both my wife & I.

Ella was born by emergency C section and was admitted to university of South Wales neonatal intensive care unit (NICU).

Ella wasn't responding to early medical treatment and consultants wanted to investigate further as she was suffering with inconsistent sodium levels and high numbers of apnoeas.

10 weeks on, we met with the genetic team to undergo tests which later determined Ella has an extremely rare genetic condition called Schaaf-Yang syndrome. Schaaf-Yang syndrome affects muscle tone, feeding, development and intellect. Apnoea is also a common symptom in children.

Ella was not only struggling with her disability but also fighting the challenges that come with prematurity which are heightened by her syndrome. She has chronic lung disease so picks up viral infections easily which can have devastating affects. Ella spent 5 rocky months at NICU and a further 1 month on island ward before being allowed to come home 1st December 2020.

For both wife & I it was best day of our lives and being just before Christmas made it a perfect first family Christmas. We thought it was the start of our family life together and whatever was to come with Ella's challenges we'd take in our stride and importantly make Ella’s life the happiest it can be. We thought the nightmare of intensive care was over but Ella had other ideas.

Eight months later, Ella took a turn after doing so well she was rushed into hospital for reasons still unknown, she was admitted onto PICU and ventilated. As we got on to the ward the ventilator wasn't positioned correctly and Ella was dropping her saturation levels. We were asked to wait in the parent’s room whilst doctors and nurses worked on settling her on the ventilator.

So many emotions were running through our minds. Naturally why Ella? How is this happening? But we never thought about what could come next, in that moment you’re completely in the hands of others there was nothing my wife or I could do.

Ella had been ventilated before so it wasn't unknown territory. I think every parent that's been on NICU experiences things you hope you'd never experience and you start to quickly learn the medical terminology, monitors & sounds. The sounds that are good and unfortunately the sounds which are bad. Even though we were on intensive care we were positive, in a place where it had become familiar and preparing myself for a stint in hospital & unknowing the difficulties that were going on next door.

The doctor come into the room and told us Ella was exhausted and the famous words you never want to hear as parents, “we've done all we can”. Ella wasnt responding to ventilation and so asked us to enter the room and will her on for the last time.

We went in straight by her bedside, a team of what seemed like a mix of ten doctors, nurses and consultants were working on her trying to settle, ventilate, give medication, canulate and taking turns to physically pump oxygen into her lungs to keep her alive. We watched from the foot of the bed and were shouting her name and telling her we were with her that we were proud but “today's not the day Ella”. Thankfully after over an hour of exhaustion she responded. To this day I'm convinced our voices saved her life on the very last chance she was given to pull through.

Ella along with so many others in NICU are the bravest of us all. A true warrior that's already overcome so much in such a small space of time. Ella faces daily challenges but I'm beyond proud to say she faces them head on and is getting stronger and better every day that passes.

I want to do something worthy in her name that raises funds for research into her syndrome in the hope that can benefit children with Schaaf-Yang syndrome and development in what is a relatively unknown syndrome.

Schaaf-Yang syndrome like many others is a large umbrella of gene mutations. At the time of her diagnosis Ella's gene mutation had only ever been seen 4 times before, that makes her around 1 in 1.5 billion. Ella is our princess and loved by all that know her, she's beautiful, happy and progressing so well making us the proudest mummy and daddy there is.

The challenge:

On August 12th we start the climb at Mount Kilimanjaro, the highest Mountain in Africa. An eleven day hike over 5895m. I'm happy to say I'll not be completing it alone! My friend Craig will be with me every step of the way until we stamp Ella's flag at the top.

Our target is to raise as much as possible but together we'd be immensely proud to raise £5,000 of which every penny will go to the charity. The trip its self will be completely self-funded.

We'd be immensely grateful for any donation you can spare to help us achieve our goal the money will go to a great cause and one which we are proud to represent.

Let's get stuck in and try to make the difference.

Thanks for your support and keep an eye out on socials for updates and a few smaller challenges on the way.

Let's hope the altitude doesn't spoil the Guinness at the top

Jon & Craig.

https://www.fpwr.org/about-schaaf-yang-syndrome#research