We are all so happy that Harry is so well a year after he was dangerously ill. Bristol Hospital really saved his life and I am raising money so that they can continue to save childrens lives. Please help and click to donate to such a worthy cause.

If you want to know more about Harry’s condition please read this. I apologise it's a bit long but it does have a happy ending.

In January last year Harry, our youngest grandchild, was admitted to the Intensive Care Unit at The Bristol Royal Hospital for Children (BCH) with life-threatening symptoms. Poor Harry was very listless; unable to move his arms or legs, speak, eat, drink or stay conscious. He had a fever and was vomiting.

After much testing and deduction, consultants were finally able to diagnose that Harry was suffering from a rare neurological disorder, called A.D.E.M. (Acute disseminated encephalomyelitis). He tested positive for the ‘MOG’ antibody (as is found in MS) which led to an intense autoimmune attack causing severe nerve cell damage and inflammation throughout his brain and the pons region of his brainstem. The pons is very important as it connects the brain to the spinal cord and controls unconscious functions like breathing, swallowing, all your motor movements, control of bodily functions and sleeping/waking/consciousness.

I can’t get across how terrifying this was for Harry’s parents, Helen & Craig, & for all the family and friends supporting them. It was heartbreaking to see how sick and vulnerable Harry was.

Inspired by Harry and to show my appreciation to all the staff at BCH, I am fundraising for #Wallace & Gromit’s Grand Appeal, the dedicated charity of The Bristol Royal Hospital for Children, by running a half marathon (21km) as part of the Half IronMan Relay Team on October 21st 2023 in Cascais, Portugal.

I hope to raise a minimum of £2,100, £100 per kilometre. If you can help by donating, no matter how small the amount, myself and our family would really appreciate it. 100% of money raised will go towards providing pioneering medical equipment to help save the lives of sick children and keep families together.

Continue reading to understand more of Harry’s condition, cause, treatment and how he is now ...click on the icon top right of the cover photo.

The cause

The cause of ADEM is not clear, but apparently in more than half of the cases, symptoms appear following a viral or bacterial infection, usually a sore throat or cough. Harry had just recovered from the bacterial illness Scarlet Fever so it was thought that this most likely compromised his immune system.

Treatment

The poor little guy needed to be on a ventilator and he was placed into an induced coma for many weeks in intensive care to give him the best chance of recovering.

For most, a course of corticosteroids to reduce the inflammation is the treatment for ADEM. Unfortunately this didn’t work for Harry. Such a severe attack proved to need two more types of invasive medical intervention; IVIG (infusions of useful antibodies) and multiple sessions of plasma exchange (removal of Harry’s blood, separation of his plasma and blood cells using a centrifugal machine and the return of Harry’s blood cells mixed with healthy donated plasma).

You can imagine the myriad of machines the poor boy was hooked up to for constant monitoring of his vitals, the delivery of various medicines, food intravenously plus more serious central and arterial lines for his treatments, as well as having physio for a collapsed lung.

Harry had regular MRI scans to assess the efficacy of the treatments. Once Harry’s care team saw an improvement, he was able to come out of the induced coma and recover in a high dependency unit, where Mum and Dad could stay with him overnight and eager sister Amber could begin visiting her brother 💕Let’s just say the hospital walls were covered in drawings from Amber to cheer him up.

The care

There’s a reason it’s called Intensive Care. They don’t stop. Harry received the very best care from the NHS and we are eternally grateful. The whole medical team; Neurologists, Consultants, Doctors, Nurses, Nursing Assistants, Physio’s, OTs, Speech and Language therapists (and many more!!) were absolutely amazing during this very challenging time.

It was also a very challenging time for the NHS who were taking action to highlight the long term deterioration of the service amid chronic shortage of health care staff and rising living costs. Yet the NHS staff continued to work hard as a team to prioritise resources to protect emergency treatment and critical care.

Aside from the incredible ICU care, Harry benefitted from countless physio and occupational therapy sessions to regain his mobility, speech, cognitive skills & the ability to eat and swallow food. On top of this, family were offered counselling and support and when well enough, Harry was even taken weekly to a Bristol zoo in his wheelchair and out for forest school sessions with play therapists. Amazing.

How Harry’s doing

Harry was discharged home (after much pleading and with a long list of medications) the night before his 4th birthday so that he could enjoy his birthday at home with his family :)

Exactly 6 months on from his hospital discharge, Harry is doing really well and has just started school! We are all so proud of this strong, funny, kind and loving little boy who brings enormous joy to us all. We are so grateful and thankful to everyone at BCH for their care and medical skills in helping Harry to recover.

The prognosis is a 50% chance of another attack in the next 18 months.

The challenge

Inspired by Harry and to show my appreciation to all the staff at BCH, I am fundraising for Wallace & Gromit’s Grand Appeal, the dedicated charity of The Bristol Royal Hospital for Children, by running a half marathon (21km)

I hope to raise a minimum of £2,100 for BCH, £100 per kilometre. If you can help by donating, no matter how small the amount, myself and our family would really appreciate it. 100% of money raised will go towards providing pioneering medical equipment to help save the lives of sick children and keep families together.

Thank you for any donation that you can make (£ or €) it will all help. You can follow my training, progress & race day on Strava and Facebook. #4UHarry #BristolChildrensHospital #TeamGrandAppeal

To find out more, start fundraising, or make a donation to Bristol Children's Hospital please visit www.grandappeal.org.uk email info@grandappeal.org.uk or call 0117 927 3888. https://www.grandappeal.org.uk/the-grand-appeal/

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