The loving parents of a tot with a rare genetic condition were invited to a special afternoon tea at the Houses of Parliament, to recognise the fund-raising efforts of the family and their friends.
Jack Gray, aged one and from Alnwick, suffers from tuberous sclerosis complex (TSC), which affects one in 6,000 babies.
It causes mainly non-cancerous (benign) tumours to develop in different parts of the body, most often affecting the brain, skin, kidneys, heart, eyes and lungs.
The tumours caused by TSC can result in a range of associated health problems, including epilepsy, learning disabilities and behavioural problems.
These issues can range from mild to severe, and it’s possible to have only a few of these problems or a wide range of them. The scale of Jack’s condition is not yet known. Jack was diagnosed with TSC in May. Since then, his family, including mum Sarah and dad Ian, and friends, have collected around £8,000 for the cause and their aim is to hit the £10,000 mark by May 2017.
Last month, they attended the afternoon tea in London, which was hosted by the Tuberous Sclerosis Association (TSA). The charity wanted to say a special thank-you to the family for their fund-raising efforts.
The event was hosted by MP Greg Mulholland and the key speaker was former Poirot star David Suchet, whose grandson has the condition.
Sarah, 32, said: “The event was excellent. It showed the hard work going on behind the scenes to raise awareness and to try to secure funding for currently unavailable vital medication.”
Explaining how Jack was diagnosed, Sarah said: “He started having seizures. He then had scans, tests and a three-week stay at Newcastle RVI and he was diagnosed with TSC. It is rare and variable. We don’t know yet where Jack is on the scale, only time will tell.”
To raise money for the charity, Jack’s godmother Luisa ran the Great Wall of China marathon and his uncle Doug did a triathlon. There has also been a singing fund-raiser, a Phoenix card party, and family and friends raised donations at birthday parties.
The Alnwick rugby team, including dad Ian and uncle Ali, are currently growing moustaches for Movember for the charity. Sarah is considering running a marathon in 2017 while pushing Jack’s pushchair with him in it for the final couple of miles and asking people to join her for a mile or two.
This Sunday, Alnwick Rugby Club is auctioning a signed 2013 Lions shirt, for TSA and RVI children’s ward. Bids can be made on Alnwick Rugby Club’s Facebook page.