A couple who were told their son may not reach his second birthday due to him being born with a rare medical condition have seen him turn three and continue to raise funds to improve his quality of life.
Two years ago, the Standard featured Lee and Jodie Thompson, of Wainfleet All Saints, and their efforts to raise enough money to buy their then 16-month-old son, Harrison, a number of specially adapted items, including a special wheelchair.
Harrison has spinal muscular atrophy (SMA) type I, a condition affecting the neuromuscular system.
At the time of the Standard’s last article, he was unable to walk, grip objects, or hold his head up unaided.
Today, Harrison has made some progress in terms of his grip and holding up his head, but still cannot walk – or sit up – without assistance. In fact, because he is so keen to sit up, he has developed scoliosis.
Lee and Jodie continue to raise funds to help Harrison, but are about £15,000 short of the £24,000 needed for the wheelchair.
The family’s finances were put under pressure about a year ago when they had to travel to Paris for four lots of experimental drug treatment for Harrison, which, thankfully, they are now able to access in the UK.
The SnapDragon wheelchair would support his back and bring Harrison a level of freedom he desperately wants, says Jodie, particularly in terms of playing with his older brother Lennon.
“He’s had a trial in it,” she said. “He keeps asking when is he going to get it. He just wants it right now.”
“It will mean everything to him,” she added.
Jodie says the family find themselves in ‘uncharted territory’ with Harrison reaching the age he has.
She said: “There’s probably three or four Type I children in the UK who have got past two. It’s not really heard of.”
“It’s more than we ever would have expected,” she added. “When we saw what could have happened and how other children have gone, we have been lucky with how his SMA has progressed. For now, we are just enjoying every day we get with him, to be honest.”
Friends and family, including Jodie’s father, will be raising funds for Harrison through a skydive on May 27.
You can donate to them at mydonate.bt.com/fundraisers/garrysskydive