About Me

Harri is 7 he is a happy, sociable boy who is so loved by all who know him.  He lights up a room with his beautiful smile and his cheeky personality.  His family and friends are now fundraising for:

• Life changing SDR surgery to permanently remove the tone in his legs and so improve his mobility. This procedure costs £25,000 and has been offered as a self-funded option for Harri by the Royal Bristol Children’s Hospital.

• Intensive therapy and rehabilitation which is required post-surgery.  This is needed for at least a two year period to help him learn new patterns of movement and build his strength back after surgery.  It includes physiotherapy (£70 an hour), hydrotherapy (£60 a session), hippotherapy (£50 per 30mins) and Intensive Therapy Courses (£900 – £1300 a week) 

Harri has already done the hard work to get him in the best shape for surgery and is ready to go but we need your help to make it happen. Please help us to give our beautiful, determined little boy this opportunity and this ability that we all take for granted.

HARRI’S STORY

In the beginning…

On the day that Harri was due to be induced, and whilst still in the womb, he became severely distressed and suffered a lack of oxygen (known as hypoxic-ischemic encephalopathy event or HIE).  After being delivered by emergency caesarean section, Harri spent the first 3 weeks of his life in the Neonatal Intensive Care Unit (NICU) fighting for his life as he battled to survive the catastrophic damage to all his organs that had resulted from this traumatic birth event.  Whilst one by one Harri’s organs began to mend and heal, unfortunately the damage to Harri’s brain was permanent and he was left with a severe brain injury.  Against all the odds and with the help of the brilliantly dedicated teams caring for Harri, he fought hard and grew stronger and stronger day by day until eventually he was well enough to be able to come home to be with this family.  This was only the start of his journey and Harri has faced numerous challenges throughout his young life.

For the first six month of his life Harri struggled to thrive.  He didn’t put on any weight and was still only 9lbs at 6 months old.  He woke every 2 hours throughout the night until the age of 2 and life was very difficult for all of us.  

At 6 months old Harri had a review with his paediatric consultant, along with his health visitor and the hospital physiotherapist.  There were lots of questions asked, some assessment of Harri and then we were left alone in the room to wait.  After a while the team came back into the room, advised us that Harri had cerebral palsy and then they all left the room again, leaving us devastated.  Although we had been advised in NICU in Portsmouth that Harri had severe brain damage, you hope that a miracle will happen and everything will be ok.  But here we were with a diagnosis and no idea what the future would be.  No leaflets.  No information.  No signposting to places to go.  It was a very lonely, scary place to be.

Epilepsy

We muddled through the next few months coping as best we could, until 3 august 2017, just before Harri’s first birthday;  we had another hospital appointment and were just on our way to Poole Hospital when Harri had his first seizure.  Luckily I noticed as I looked in the rear view mirror of the car that Harri’ eyes didn’t look quite right.  I quickly pulled over and rushed out of the car and took Harri out of his seat as his limbs started to jerk and I realised what was happening.  My 16 year old daughter was with me and so very courageously called for an ambulance whilst we attempted to keep Harri safe, all the while people just driving past going about their day.  It seemed like an age before the ambulance arrived and we were taken off to hospital leaving our car parked over someone’s drive!  Once in the ambulance they proceeded to give Harri diazepam to try and bring him out of the seizure, however what it actually did was stop him breathing.  He was fitting for 30minutes whilst they gave him CPR and got him into the hospital.  It was a terrible experience, especially for my young daughter who had never experienced any type of trauma before.  Eventually Harri slowly came round and when the doctors were satisfied after a few days in hospital that Harri was back to his normal self we were able to go back home.  Eight months later it happened again.  This time at a supermarket checkout as we were about to put our shopping on the conveyer belt.  Again Harri’s eyes didn’t seem right and so I scooped him up out of the trolley and drove to Bournemouth hospital rather than wait for an ambulance.  This time the seizure went on for an hour, again they gave him diazepam, and again he had trouble with his breathing.  Once he was stable we were taken to Poole Hospital by ambulance.  Again we had a 2 day hospital stay while the doctors monitored him, eventually sending us home once they were satisfied he was ok.  

At 2 years old Harri was diagnosed with epilepsy after suffering a number of further seizures.  They have changed in presentation and are very different from those original ones, but no less stressful and upsetting.  Now they happen at night and generally last a few minutes.  Because they happen at night Harri has to be monitored throughout the night via video.  When they do occur they generally start with him making a noise, which thankfully alerts us to investigate.  It is always pretty difficult to tell when they start, when they end and what’s actually going on because they are much more subtle generally just involving his eyes and some lip smacking, but it’s still just as terrifying!  They often involve him being sick and so it’s always pretty worrying for us if he gets unwell because there is always the underlying anxiety that one is coming.  

Harri is now prescribed daily medication and rescue medication to help manage his epilepsy, and whilst the medication works well to keep a handle on his symptoms, Harri continues to have sporadic episodes which are always really stressful, completely terrifying, extremely exhausting and very upsetting and will often involve a hospital stay to monitor his wellbeing.  We spend a lot of time in hospital!!!

With regards to Harri’s mobility he suffers from very high tone in all his limbs, called Bilateral Spastic Cerebral Palsy.  It severely impacts his gross motor functionality (his ability to walk, sit, climb and stand) making it extremely challenging for him to use normal movement patterns and causes him difficulty with his balance and coordination.  He has had regular physiotherapy from a very young age to try to help reinforce normal patterns of movement with the aim of overriding his more unnatural, stiff way of moving, but because of his spasticity, Harri tends to walk on his tiptoes with his legs crossing his midline which makes falling and tripping a frequent occurrence.  He is fiercely independent, very fast and is desperate to be active and play like his peers.  This combination makes it extremely difficult to keep him safe and unfortunately often results in many visits to A&E.  We spend a lot of time in hospital for one reason or another!!

Harri’s character

He has endured multiple medical procedures and interventions over his life to try to help him manage his tone, always with such a brilliant, no fuss attitude.  He always makes me so, so proud!  He has had his left arm put in a cast to encourage him to use his more challenged right arm / hand.  He has has cast on both his legs twice to help him to walk on flat feet.  He has had Botox in both legs twice to temporarily reduce the tone and has a procedure to lengthen his tendons to improve his ability to move his legs away from the midline of his body.  However, no matter how many procedures and interventions he endures the spasticity in his muscles continues to prevent him from safely doing everything he would like to do, like sitting, standing, walking, running, jumping and playing.

Still despite all Harri’s difficulties he IS ABLE to take independent steps, stand independently, climb and even jump.  He has surpassed everyone’s expectations and continues to progress every day because of his stubborn determination and will to achieve.  He tries so hard to be able to do all the things that his peers are able to do and boy does he love to copy!!  His latest skill, which he likes to show off at every opportunity, is to do a roly poly independently… he’s such a superstar!!  He thrives on recognition and praise and loves to be rewarded with a round of applause or a high five for all his hard work.

Harri has also been diagnosed with global development delay, meaning it takes him longer to reach his developmental milestones which impacts his ability to play, understand his world, communicate and regulate his feelings.  Despite this he is really sociable, fun loving and smart as a tack!  He really loves:  His friends and family; animals, nature and the outdoors; cake, ice cream and chocolate; books, TV, iPads and mobile phones; cars, trucks, fire engines and the avengers and Batman, but especially the HULK!  One of his most favourite things to watch has been Strictly Come Dancing, which we often have to watch on repeat continuously.  His absolute favourite dancer is Johannes!  

Recent years

In the last year his communication has really started to develop.  He is able to use lots of signs and has started to use lots of words to make himself understood.  He is even beginning to string words together and make a sentence.  He loves numbers and counting… he’s doing really well at school.  He can at times still get very emotional and frustrated because he can’t fully express himself and when this happens he can often find it difficult to cope with his emotions.  This manifests as anger when he will hit out, throw things, bite, scratch and kick in a bid to make himself heard.  He also really struggles with transitions from one activity to the next, which can often make life really stressful and difficult.  It can at times be really challenging and dangerous trying to keep him safe whilst helping him to regulate his emotions, especially now he is getting bigger and stronger.

The last few years have been extremely difficult for Harri due to the pandemic.  He has missed lots of school due to numerous isolations and lockdowns.  He has not received the level of support that he so desperately needs from his medical team to monitor his progress, discuss and plan his ongoing care and give him the best opportunity to build his strength and improve his mobility.  His family would love to get Harri walking on his own, communicating, being able to play independently with other children, but he needs extra help and support to be able to do these things safely.  With the help of a lot of very special people, Harri is doing really well and improving his abilities all the time.

Harri is always going to need therapy to maintain the skills he develops and to give him the best opportunity to reach his full potential so the fundraising will never stop!  Please, please give generously to support this special boy who lights up every room with his amazing smile. You can donate, fundraise or just spread the word. Every little thing counts. 

Thank you so much, your support means so much to us