Case Studies

Brave Little Jamie Beaven

LITTLE Jamie Beaven is just five years old but has already fought through a devastating cancer battle that would have broken many.

At just 16 months old Jamie was diagnosed with acute lymphoblastic leukaemia. It was devastating news for his parents Jo and Paul who had conceived Jamie thanks to IVF. But at the time they had no idea about the traumatic ordeal that lay ahead. Jamie had to undergo three and a half years of chemotherapy - a treatment that had to be administered orally by his parents.

"It was awful because Jamie was so young for the first year he had to be restrained while we injected the syringe of chemotherapy into his mouth," explained Jo, 43. "But we just had to do it because as the doctor said if he didn't receive the treatment it would be fatal."

Jamie is now in remission but the ordeal hasn't left him without a few battle scars.

"The various medications he was on had a number of side effects including nerve damage to his legs which meant he had to learn to crawl again," added Jo, who lives in Abbeymead.

"It also completely destroyed his immune system and we basically spent the first year after his diagnosis in the house. "Any virus would have made him very ill because he didn't have any defences in his immune system. It was just awful."

This has meant Jamie, who is a bit of a thrill seeker, had to spend his developmental years in a sheltered environment unable to do many of the things other children his age were doing. But in May this year Jamie finally got his day to be a normal child thanks to the Pied Piper Appeal.

The charity arranged for the family to spend a few days at Disneyland Paris and it was a dream come true for Jamie. "It gave us all something to look forward to and when we finally got there it was absolutely brilliant and Jamie just loved it," added Jo. "He wouldn't go anywhere near the baby rides for him it was the bigger the better."

Meet Harrison Galligan

FOR the first three years of his life Harrison Galligan has been fighting an ongoing battle to survive. Because of complications when he was born Harrison didn't get enough oxygen to his brain and suffered a significant brain injury. At the time doctors weren't sure whether Harrison would survive but after three weeks at Southmead Hospital in Bristol Harrison was able to go home with mum Gemma Ives and dad Gerrard Galligan.

"Unfortunately because of Harrison's start in life he was diagnosed with severe spastic quadreplegia cerebral palsy, which means he has limited to no use of his limbs," said Gemma, who lives in Old Bath Road Cheltenham.

"He is unable to sit up, walk, talk and has little head control. As well as all of this Harrison also suffers from epilepsy, global developmental delay and is visually impaired. Harrison also has to be fed through a tube that goes straight into his tummy but despite all of this he is a very happy little boy who loves to be cuddled."

For Harrison and his family life can be pretty intense and is usually made up of doctors' appointments and hospital visits.

"Earlier this year we found out that Harrison has to undergo an operation to straighten his back otherwise he will become palliative care as the curve, if continues, will crush his lungs and stomach," added Gemma.

At the end of September Harrison will undergo an operation to try and fix his spine but it is very high risk and there are concerns whether he will survive. Because of his age and how high risk it is if it doesn't go well it could be a case of us having to turn off the machines," said mum Gemma.

After finding out about the operation Gemma and Gerard decided to make a bucket list of things to do with Harrison. "We just want to make as many memories with Harrison as possible," added Gemma.

In June this year the Pied Piper Appeal gave the family some incredible memories when they paid for the trio to spend five nights at Disneyland Paris.

"It was absolutely amazing and we could tell Harrison really enjoyed himself," said Gemma. "Some of the rides were wheelchair friendly as well so he was able to enjoy the whole theme park experience and now we think he's a bit of a thrill seeker. He would just burst into fits of giggles the whole time we were there and I can't thank Pied Piper enough for giving us some of the treasured memories we have with him."

Henry Powell - Davies: Born 5th October 1996

In the early hours of Saturday 5th October I went into spontaneous labour at home - I was 25 weeks pregnant with my first child, I was admitted to Gloucestershire Royal Hospital and despite efforts to hold off the delivery of my baby, Henry was born 12 hours later. He weighed 2lbs 5oz (a bag of sugar!), quite a good size, and I was told that he would need to be transferred immediately into the Special Care Baby Unit because there was a high risk he would not survive.

Henry made it through the first night and after numerous infections and incredible worry, he started to breathe on his own and was able to return home on the 22nd January 1997, his actual due date. During his time at Gloucestershire Royal, his brain was checked for damage and it was confirmed that he had suffered some damage which would most likely affect him on his left side physically as well as a likelihood that he would be visually impaired. It was a big shock but I was able to be at the hospital nearly all the time and be with my son day and night - he lived in the incubator at the hospital in SCBU and the support that we received from the consultants and nurses was second to none.

At the time I worked for Peter Hickman, founder of the Pied Piper Appeal and he supported my family throughout and we remain in touch - I knew the work that had begun with Pied Piper and as we returned back to the hospital week after week, month after month and now year after year, the new facilities have benefitted all my children (who all were admitted to SCBU on arrival) - they particularly enjoyed the new children's waiting room.

Both prognosis' were right and Henry is visually impaired and suffers with some physicality issues - we still attend Gloucestershire Royal for an annual appointment.

Over the years I have seen the facilities improve and in turn this has meant that more babies have had a higher chance of survival - Henry is living proof that you can survive an early birth, he has passed all his GCSEs with excellent grades and is currently studying his A Levels at Crypt hoping to read Chemistry at University. Henry is 18 in October of this year - this is a real milestone for him!!

Zack's Story

Born four weeks premature with an enlarged kidney, little Zackery Phelps spent the first ten days of his life at Gloucestershire Royal Hospital receiving kidney treatment. He was so small that he had to wait almost a year to receive his first kidney surgery.

Minutes before going to theatre, a final examination picked up a heart murmur. An emergency scan revealed a hole in his heart and vein going to the wrong side. Open-heart surgery was scheduled a year later. Zack was only 23 months old... but he pulled through, staying in intensive care for two days.

Zack was not even two years old, but he'd seen more surgery and treatment than most people twenty times his age! But it didn't end there. This brave little boy had to undergo further operations on his heart, including the insertion of a stent in his main upper body vein.

All was going well for Zack, but two years later, aged six, he was admitted to the hospital again, with a distended stomach. Following scans, further tests and an endoscopy, Zack was finally diagnosed with Coeliac Disease. Age 8, he was back again, this time to have his tonsils removed!

Over the years, Zack has had countless reviews and check-ups. In 2013 he had a further diagnosis of heart block and is aware that one day he could require further surgery if his stent needs adjustment as he grows. He continues to regularly attend the children's centre to see his consultant and dietician for support with his gluten free diet which he has adjusted to over the years.

Zack, now 12, says that his involvement with the Pied Piper Appeal from a young age has been one of the things to inspire him towards fundraising and helping ensure that other children are supported whilst in hospital as he has been. In addition to helping the Appeal, Zack has a supported heart charities and Coeliac UK and helped raise awareness of the conditions that he has experienced.

In 1992, Pied Piper supporters helped the charity to fund the £2 million children's wing at Gloucestershire Royal Hospital. Both Zack and his family found, the facilities help make children's visits much less traumatic and he is proud of the charity for the continued work that they do, particularly funding specialist equipment and play and learning materials which are needed, but which the NHS cannot afford.

Children all over Gloucestershire rely on the funds raised by Pied Piper to ease their fears, aid a speedy recovery and get on with life. Find out more about how you can help other children like Zack here.

If you or your family have been supported by Pied Piper in anyway and would like to share your story please click here to complete our your story form.