Meet our patients

We knead you!

Hold a bake sale and raise some dough between 17 and 23 October 2016. With your support, we can help transform the lives of seriously ill children and their families at Great Ormond Street Hospital. Meet some of our amazing patients and find out why we need your help.

Meet Aidan

Aidan was referred to Great Ormond Street Hospital at 18 months old for laser surgery. Aidan’s mum, Gail, tells their story.

Diagnosis

Gail knew something was not right as soon as Aidan was born. He was born with a large birthmark across his face, neck and ears. “Obviously he had the birth mark but it was not until about 5-6 months old I recognised there was a problem.”

Aidan was referred to GOSH at 18 months old for his birth mark and spent his time in Island day care where he underwent laser surgery.

“The first time they ever lasered his face he was so young they only did a little at a time, but that was bad enough for me. He’s had his face lasered eighteen times now”.

Aidan’s birthmark has affected his eye sight which he is also treated for at GOSH. He wears glasses when watching TV and doing school work. 

Today

Aidan, now 10 years old, has become very self-conscious of his face in public and people staring. He gets excited when he knows he is going to GOSH for laser surgery but when it comes to leaving the building his mood changes. However, Aidan has been offered makeup to cover his birthmark but he refuses, saying, “this is what I was born with - why would I want to change for anyone?”.

At a recent assessment it was revealed that Aidan had ADHD, meaning he cannot stay still for long. Aidan’s brother Jason also has a disability.

“Going to GOSH is a part of our life, we’re used to it. Mothers with children with disabilities are scared to ask for help because as a mother we think we should know these things. At first you feel clueless because you’ve never had a child with a disability before.”

“My life wouldn’t be the same without GOSH. They’ve helped me so much. If you’ve got any questions they’re happy to help you. You just can’t let it affect your life, you have to just carry on. If someone told me your kids are going to be normal I wouldn’t know how to deal with normal. What is normal?”

Aidan is a keen chef and his favourite meal is Spaghetti Bolognese. His favourite subject at school is maths. When he is older Aidan wants to pursue cooking, maths and “continue to be kind”. 

Meet Ava

In January 2014, Ava was transferred to Great Ormond Street Hospital (GOSH) with trouble breathing. Shortly after arriving, Ava experienced what would be the first of four heart attacks. After the third heart attack in 30 minutes, her parents Mary-Jane and Clive were told to expect the worst.

Ava had suffered heart failure three times in less than 45 minutes, and during the last one, Clive and Mary-Jane were told to say goodbye. Ava’s parents did just that and retired to the parent lounge, broken and wondering how they would tell their 10-year-old son that his sister had now gone to be with the angels.

A risky option

Suddenly there was a knock at the door and the surgeon, looking exhausted, told the parents "We've got her back!" He continued: "There's this risky option..." Clive cut him off, saying "Do it, but do it now!" Not hesitating for clarity, he turned and left. Ava had gone into cardiac arrest for a fourth time, however, the 'risky option' was in place and switched on saved Ava's life.

Ava was put on extracorporeal membrane oxygenation (ECMO), a replacement heart and lung bypass machine that would help clean her blood and allow her other organs to rest. “That little square box, no bigger than a photocopier paper box, saved our daughter’s life."

Meet Rudy

Diagnosis

Rudy first came to Great Ormond Street Hospital when he was five years old, after his parents noticed their usually bubbly boy was being sick for no apparent reason.

Bakeitbetter_2016_Rudy

Rudy’s father Sam says: “As well as nausea, he looked like he was in a lot of discomfort. Rudy lost the cheeky and charming character that we knew and loved.”

After an emergency brain scan, the family’s fears were realised. “My heart sank as they explained that Rudy had a sizable tumour. They said we needed to go straight to Great Ormond Street Hospital, which I’d always associated the hospital with really sick children, so I felt incredibly scared.”

The day after arriving at GOSH Rudy had his first operation to release pressure in his brain. Sam says: “The operation took a nerve-wracking six and-a-half hours!”

After his initial operation, Rudy’s condition worsened and he lost sensation in the right side of his body. He was rushed back in to surgery after a scan revealed a blood clot, almost the same size as the tumour, had formed in his brain. 

The following days remained worrying as Rudy’s recovery was slow and variable. Sam recalls: “But during Rudy’s recovery, the nurses on Koala Ward were fantastic. They all fell in love with Rudy and looked after him as if he was their own. While at GOSH I’ve counted over 75 people who helped Rudy in one way or another, and I can’t thank each of them enough.”

Bad news

After two years of having the all clear, Rudy and his family were called to GOSH in December 2014, following a routine brain scan. Rudy’s dad recalls the day, “I remember Dr Michalski walking towards us with his head bowed. I got that dread as I knew immediately that something wasn’t right.”

A second tumour had been found on Rudy’s pituitary gland, at base of his brain. “They wanted to start 52 weeks of chemotherapy to stop the tumour growing.”

Recovery

“Rudy has come out of it a little battle scarred. He’s missed three years of his childhood and he’s behind in so many things. He’s raging with enthusiasm and he’s just very frustrated when he can’t keep up with his peers.

“The experience has inspired him to want to be a nurse or a doctor. He told me that he would be able to talk to the children. We’re really lucky. Without GOSH Rudy wouldn’t be here today.”

Meet Sophie

bakeitbetter2016_sophie

Sophie has been coming to Great Ormond Street Hospital since she was just a few days old. She was born with chronic kidney disease caused by a blood clot, and by the time she was 16 months old her right kidney was so damaged it needed to be removed. Mum Fiona tells their story…

“We had no idea that anything was wrong while I was pregnant.” However, when Sophie was born by C-section at her local hospital in Slough, 2002, it became clear Sophie was fighting for her life.

“As I was recovering, a nurse noticed that Sophie’s breathing was really fast. I remember her little chest fluttering up and down. Sophie was very ill and went into intensive care. At first they thought it was her heart and we were told to expect the worst.”

Diagnosis and surgery

“Sophie was put in an incubator and blue lighted to GOSH by the CATS team. We had to drive ourselves to GOSH not knowing if Sophie would still be alive when we got there.

“When we got to GOSH they found that it wasn’t her heart but a blood clot on her veins leading from her kidneys. Sophie was in intensive care for two weeks and then we spent four weeks on Eagle ward. When we were in NICU the nurses decorated her cot with some drawings, which was really thoughtful.

“We all spent two weeks at GOSH with Sophie having her blood pressure checked 24/7 and it was decided that her right kidney was suspected to be causing the high blood pressure.”

Removing Sophie’s right kidney, with the help of medication, returned her blood pressure to normal. However, unfortunately for Sophie, this wasn’t the last time she would find herself at GOSH.

Infection

“When she was six, Sophie started feeling very unwell and also had a puffy face one morning. We took her to our local doctors and he suspected meningitis. We ended up at GOSH and Sophie was found to have post-streptococcal glomerulonephritis (GN).

Post-streptococcal glomerulonephritis (GN) is a kidney disease that inflames the kidneys, which are then less able to filter the urine.

“It was really scary for us because she also had blood in her urine. I was desperately worried that it might damage the kidney she had left. However, we spent two weeks at GOSH and although Sophie felt very unwell initially, eventually she went to the school there and really enjoyed herself.”

Today

Sophie’s still on medication today and she comes to GOSH every six months.

“We don’t know what treatment she might need in the future. She is managing now and that’s what counts. As a family we take every day as it comes. Sophie’s grown into a really strong and determined girl. She’s very confident and loves drama and singing. Her younger sister Emily, 11 years old, is very supportive of her."