Ollie’s Walking Challenge

Thank you for taking the time to visit Ollie’s and Connors Fundraiser for NHS Charities and The Cavernoma Alliance UK.

Inspired by Captain Tom Moore, Oliver is aiming to walk 100m, with the aid of his brother Connor. Connor is Ollie’s Young carer. Hoping to follow the feel good and helpful fundraising for the NHS who saved Oliver’s life in 2017 and again in 2019, also for Cavernoma Alliance U.K. who supported our family through the worst times in our lives.

Oliver’s  Background

Oliver was born healthy with no problems at QMC, life was going well. He was enjoying preschool and being a typical 3 year old.
It was summer 2017, where life’s deals a twist.
it was summer holidays, we had planned several days out. The next ones planned were Twinlakes, Sherwood Forest and fun farm.
On the day of Twinlakes, Oliver was enjoying the day but we noticed he seemed to be slightly limping. At Sherwood Forest he really began to struggle walking, he seemed very agitated and emotional. I decided to take him straight to the GP that morning, where he was checked over. We were referred to a Local paediatric doctor. My wife planned early afternoon at Fun Farm Grantham, where Oliver took a drastic turn for the worse!

Olivers whole right side had slumped and stop working, he could not move his arm and leg, he began to slur his-words. Everything went into overdrive from there, we rushed to Nottingham QMC. We were seen in A+E, he was put into a CT scan for anything to find on the brain.

They had found evidence that Oliver’s brainstem had a bleed, so they then put him under anaesthetic for a detailed MRI scan. The results of the scan had revealed that Oliver has a big haemorrhage in the brainstem. Which resulted in being diagnosed with CAVERNOMA.

A neurosurgeon said that due to the area and size, it would be to dangerous to operate and maybe the best way was with steroids, to reduced the swelling.
the plan went well, the steroids reduced the swelling, hebegan to regain the use of his right side. 

We were at home no more than a week, and all the signscame back worse than before! He was looking really bad way. He was back in for another MRI, which showed a bigger swelling and haemorrhage in the same area.
Due to the damage and swelling. TheNeurosurgeon broke the news that it would require massive invasive surgery. We were heart broken. They operated and he was in theatre just under 10 hours. We were told they could not remove all of the Cavernoma. It was too tightly attached, also the felt they pushed as far as they could safely go.

Oliver defied odds and recovered quicker and more than anyone (Surgeons  included) thought possible. He was able to walk again, talk again.

Over 2018, was a up and down year but he remained healthy until November. Oliver’s left eye muscle stopped working. It made his left eye turn in, causing a massive squint which causes a lot of double vision. It was a smaller bleed that caused it to happen. We honestly thought that was the end of our bad luck!

We were very wrong.

In Jan 2019, Oliver went to bed normally. Then as his mum woke him up to start school. 

She knew immediately, something was very wrong, Oliver couldn’t use his body or even lift his head up, even his speech and completely gone.

He was rushed back to QMC, where they re-scanned him again. It was worse than before, much worse.
it had started to grow, swell and bleed into both hemispheres of the brain.
The first operation was mainly for quality of life, but now the operation was purely to save his life,

Oliver was in theatre for another 10 hours. When the operation was over, he needed to be put in an induced coma. Where he stayed for 5 days. It was the longest 6 days of our lives. Again they couldn’t remove it all, we were told they feared to do so. If they forced the Cavernoma out, it would almost certainly we would lose Oliver to this Nasty rare disorder.

The moment he woke up, is a moment we will never forget! 

Oliver needed a feeding tube into his belly, because he couldn’t swallow. He is mainly bound to his wheelchair and Xpander chair now. He suffers with cerebral palsy, hemiplegia and Dysarthria.

Ollie is now relearning to walk with help of Physio, (she has been amazing with him! Thank you Siobhan)

He is coming on and progressing, but we always have the reminder, it could happened again..... and again. We just have to hope the scaring tissues around it is thick enough to stop another haemorrhage!

Cavernoma U.K. are pushing for research to find a cure, so the donations to them would be massive, to us it would be massive! CAUK are very special to us, they supported us through dark days and dark nights. We wouldn’t know where we would be today without them,. The families we met through the  residential or meet ups are utterly amazing and friends for life.  It is truly an amazing charity that deserves donations and support.

After both operations, we really did appreciate the nurses and doctors of E40 (Ward in QMC) they are some really special people. Also the neurosurgeons that saved his life, I remember hugging him so tightly in critical care unit after Ollie had woken up. ☺️ 

So please donate for Ollie’s walking fundraiser, so we give back to two special charities.

More information about NHS Charities Together /Association of NHS Charities: Helping the NHS do more. NHS Charities Together: Supports and champions the work of NHS Charities. Give 1 million pounds every day to the NHS improving patient care and experience. Fund major capital projects, pioneering research and medical equipment at our hospitals, helping patients access the best possible care when they need it most. Play a key role in mobilising volunteers to