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On Sunday 11 June, the Cerebral Palsy Trust invited families from Great Ormond Street, who have been a part of the selective dorsal rhizotomy journey, to come to a ‘family inspire day’, the same journey that David Lofthouse (OW 22) embarked upon many years ago which gave him the mobility to walk the Kingsleys and inspired the creation of the CPT.
It was simply an event based on a desire to connect with people; the boys wanted to meet the inspiring and incredible families they had heard so much about. Activities were planned, picnics ordered, brochures and t-shirts designed and the weather frantically checked for storms. No one was entirely clear what to expect, but as soon as the first family turned up with their son, Bryson, in full Chelsea kit and a big smile (and gave Tom T an earful for being a Spurs fan) we knew it was going to be a fun day.
The garden was a hubbub of happy people exchanging stories, experiences and favourite football teams; 28 families, children, siblings and the Great Ormond Street clinical care team and their families were in attendance. Whilst some children in attendance hadn’t yet had SDR surgery, others were enjoying all the benefits it provides. One mum was talking to a group saying how immediately after the surgery her son had slept through the night, without waking up in pain from cramps, for the very first time. These shared moments of reflection were dotted all around the garden as people got to know each other. The smiles and laughter were infectious. Alongside meeting new people and making new friends, showing the families the wonders of Wellington was a key part of the day. Seb K reflects further on the day and the activities:
“The day involved a variety of different activities which the children all got stuck into. We ran a blank T-shirt designing activity, an egg protection challenge, a scavenger hunt, marshmallow tower building in DET, and a drama showcase in the CLT. We were also very lucky to welcome back David Lofthouse and his family who spoke and offered some advice to the families on how to tackle adversity when it came to cerebral palsy. But aside from this, what made the day really special was simply being able to meet and get to know these families and their children. Each and every one of them had their own inspiring story and it was incredible to listen to some of them. As David noted at the end of the day, having cerebral palsy can be very isolating, so it was awesome to be able to come together and facilitate relationships within the cerebral palsy community. However, the highlight of the day was meeting one of the children who was about to have their SDR surgery funded by the CPT. When the CPT was first founded, we would never have dreamt that we could actually make a real impact on someone’s life and so seeing it in person was truly special. We look forward to continuing our partnership with GOSH and hope for more incredible days like this in the future.”
George Evans, one of the outgoing Upper Sixth and a founding member of the CPT reflected and said, “To see people with life-defining challenges approach existence with a smile and positive attitude was, at least for me, an unfathomably inspirational and moving thing to witness. To share the remarks I overheard at the end from some parents, ‘events like this are few and far between, but mean the whole world to our children’”.
David, who spoke at the event along with his parents about the special relationship that exists between Great Ormond Street and the Cerebral Palsy Trust and the power of friendships and community, said this, “One parent said how incredibly grateful they were for the event today and whether we could do more in future as having a child with special needs is sometimes not only isolating for the children but for the parents as well. The inspire day created a community in which people who are different can come and be at ease with their own community and see other individuals who are exactly like them. This allows the parents and especially the children to understand that yes, they might be different, but they are not the only ones and they are not alone”.
It was truly a transformative and special day for all those involved and hopefully the first of many CPT x GOSH inspire days here at Wellington. The visiting parents were consistent and gracious in their feedback about the CPT and the Picton boys they encountered. The boys are polite, kind, happy, friendly, helpful and supportive of such an amazing cause and initiative.
