Story
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Teddy is thirteen years old now. Despite a number of problems, he’s an adorable, happy, cheeky little boy who’s always smiling. His wicked sense of humor and character lights up any room—he is an absolute trooper and new complains and wants to please.
Born early at thirty-two weeks, he needed special care for three weeks before we could bring him home. Our joy turned into a nightmare when, a short while later, Teddy was in utter distress, crying for fourteen hours a day. The local doctors were clueless. We did intensive research ourselves until we identified silent reflux and its possible causes—it fitted Teddy’s symptoms to the letter. We presented it to the doctors, who had never heard of it.
We changed from breastfeeding at six weeks to formula, adding Gaviscon to his feeds, but with no success. It later transpired that Teddy was intolerant to dairy, so a milk change eased things slightly. At four months old, it was discovered that the valve at the top of his stomach had not developed properly, causing acid to pass from his stomach and burn his throat. No wonder he was screaming endlessly.
This is still an ongoing issue. Even at thirteen years old, he’s intolerant to soya, egg, and dairy. He has a low-fat diet all the time, as it’s difficult for him to digest fat proteins, which also cause constipation and reflux issues.
Teddy was not meeting his physical milestones. We were told he was hypermobile, with the physiotherapist failing to identify why he wasn’t crawling, instead blaming his mother for not pushing him—it was heartbreaking.
With no developments, we finally saw a new pediatrician and expressed our concerns. This was when Teddy’s diagnosis journey began. After an MRI scan at three years old, he was diagnosed with bilateral cerebral palsy, affecting all four limbs but predominantly his legs. The correct intensive physiotherapy was finally commenced, and Baclofen was prescribed to ease his spasms and discomfort.
Over the next 18 months, Teddy was diagnosed with epilepsy and autism. He has digestion and constipation issues, is partially sighted, has regular bouts of glue ear/infections, and continues to experience food intolerances.
What a rollercoaster ride, and a lot of medication for such a young boy to deal with on a daily basis. Teddy’s cerebral palsy means he requires daily physiotherapy. His epilepsy is classed as drug resistant and is poorly controlled, which can impact his daily life and hinder his chances of alternative procedures, such as the SDR operation and stem cell treatment. Even his Botox treatment was withdrawn due to his epilepsy and lack of funding.
These options are no longer available even though we have been working on alternative medication such as cbd oil to help control his seizures and reduce of the endless list of pharmaceuticals. Teddy was having 60 varied seizures and hour and now with extensive research, self funding medication Teddy now has 1 tonic seizure every 2 months with a hand full of focal seizures but, because of the time it has taken to get him to this stage and the seizures can sometimes happen with no warning —the only thing left to help him is physiotherapy.
His team have identified the INNOWALK machine as absolutely vital to help him gain muscle strength, improve his constipation issues, flexibility, and posture, and hopefully give him a chance to walk aided and be as independent as possible. We were lucky the last Innowalk was done by lots of fund raising by us and local people but now he has out grown it with the new one costing 25k.
While we were working on getting Teddys health the best we could we found a fabulous place called Therapy in praxis that provide alternative treatment via a integrated approach that’s not provided on the NHS, also art therapy, Psychology and much more.
We have to fund rise and self fund for his treatment at a cost of £2000 a month. But the difference they have made to Teddy is amazing, he is doing things that professionals said he wouldn’t but Teddy needs continuous intervention.
He currently only uses his walker for very short periods of walking and standing but, he’s getting stronger and is aiming to do the great north mini 50 every year and improve his time which is currently 50meters in 20mins.
Any money that is kindly donated or raised will go towards Teddy’s equipment and therapies, which are not available on the NHS.
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.