Have a Heart for Harvey

Please help us raise £17,500 for the Tree of Hope charity to help Harvey receive ongoing blocks of six-week intensive therapy programmes at The Children’s Trust and therapy equipment.

6th March 2009—the day my family’s life changed forever. My son Harvey, four and a half months old, had a "funny dream" on the Tuesday with Nanny, something "odd" happen on the Wednesday with Daddy, a recognised seizure on Thursday with me, and on Friday, 18 full-on tonic-clonic seizures (all four limbs stretched stiffly forwards and shaking, eye twitching, and breath holding). That was the start of nearly three months in hospital and horrendous daily seizures.

Up until this point, Harvey had been a "normal," happy, and developing baby. During this first hospital stay, my beautiful little baby was subjected to every kind of test possible to try and find out why: MRI scans, EEGs, hundreds of blood tests, lumbar puncture, heart scans, muscle biopsy, and of course numerous medications. You name it, Harvey was tested for it.

You expect that when you go into hospital, you’ll come home better. But no—we came home no further forward. In fact, his seizures were worse. He would start with the tonic-clonic seizure, which would then evolve into infantile spasms (all four limbs violently drawing up and forward, gradually lessening in severity as the seizure passed). They could last up to 25 minutes, and Harvey would often scream and cry throughout. Watching your baby go through this is the most heart-wrenching experience—you feel so helpless.

The seizures were relentless, leaving Harvey exhausted, and his development began to deteriorate. He was now being fed through a tummy tube, wearing a splint on his left foot and both hands, a lycra suit for stability, and sitting in a fully supportive buggy. Life revolved around appointments, seizures, and medications. Harvey was working through an array of anticonvulsant drugs to no avail. We even tried a special diet—the Ketogenic diet—which works for many drug-resistant children, but unfortunately it didn’t work for Harvey. However, it did make him more alert, so he stayed on the diet.

Eventually, after two years and a stay at Great Ormond Street Hospital having further investigations, we discovered why Harvey was having seizures. The right side of his brain was slightly malformed, causing his seizures. This would have occurred during the embryonic stage, and they don’t yet know why—just one of those things. With his type of epilepsy, no drug or diet would control it, and he would have deteriorated as time went on. As you can imagine, this was devastating and shocking news, but there was a glimmer of hope… surgery.

The operation is called a hemispherectomy, which involves disconnecting and partially removing the right side of the brain, effectively leaving just half a working brain. Scary stuff—it would leave Harvey as if he’d had a stroke. However, in young children, the remaining half of the brain has the potential to reprogram and learn the functions of the disconnected half. Although they couldn’t give an outcome for Harvey due to his significant developmental delays, the surgery offered his only chance to reduce the seizures and improve his quality of life.

18th August 2011—just three weeks after I gave birth to our third child—Harvey had the operation. The following six months were extremely tough. Harvey was in a lot of discomfort with dystonic movements and pain, and he struggled to sleep well. However, there were positive signs too. He still hadn’t had a seizure, began to smile, moved his left side, and even tried to sit up.

You’d think that after such an operation, there would be a rehabilitation programme. But no. I contacted The Children’s Trust at Tadworth, the leading paediatric brain injury centre in the UK, to see if Harvey qualified for their rehabilitation services. After an assessment, they offered Harvey a six-week intensive therapy programme. It took a year of battling with Surrey Primary Care Trust to get the funding, but finally, in March, Harvey began the programme.

It was amazing. Harvey exceeded their expectations in many areas. He became much more alert and improved his visual awareness, interaction, anticipation, core strength, arm function, understanding of cause and effect, and oral awareness. Perhaps most amazing was his realisation that he had a left side. His progress with his left hand was incredible, and therapists believe that with further therapy, Harvey could "dual switch," opening up more avenues for communication.

The Trust recommended ongoing blocks of intensive therapy for Harvey, but I have little hope of securing more government funding. That’s why we’re fundraising, hoping the good people reading Harvey’s story will help.

At the point of surgery, Harvey’s developmental age was that of a 1–2 month old. His quality of life was minimal, and his future was bleak. Eighteen months on, we have a different boy. He no longer has seizures, is happy, social, and has a desire to learn. He has shown so much promise that it would be a crime not to give him the chance to reach his full potential.

Thank you for reading. I hope Harvey has inspired you. You can learn more about his life on his website: www.harveybessant.co.uk

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7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects. If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.