A SCOTS dad is getting ready to walk all the way from Edinburgh to Glasgow to raise funds for much-needed screening for his daughter’s rare condition.
Tony Pearson’s daughter Grayce, who turns two tomorrow, was diagnosed with spinal muscular atrophy (SMA) eight months ago.
Tony and his wife Carrie took Grayce to the doctors after noticing she was kicking her legs much less than usual.
They are now fundraising for research treatments and physiotherapy to ensure continued quality of life for SMA sufferers, as well as asking the government to begin screening for the condition at birth and during pregnancy.
Tony will be walking a whopping 43 miles on 1 April to raise money for SMA, which is almost double the length of a marathon.
The family has shared a JustGiving page, stating that he will be “starting from Murrayfield in Edinburgh at 5 o’clock in the morning and walking to Glasgow Green in the same day, which could take 15 hours of walking non-stop – a big challenge but it can be done with hard work for our SMA warriors”.
Grayce suffers from type 2 of the condition, which usually presents symptoms in babies and toddlers aged six to 17 months old.
Glasgow-based Tony said today that the moment they were told Grayce had SMA was “heartbreaking”, and that they had no idea what it was or that they both carried the life-changing gene.
He said: “If they did screen for it, babies could start gene therapy the minute they are born and practically have little to no symptoms at all.
“My daughter Grayce was diagnosed at 14 months old. Me and my wife both carry this faulty gene – survival motor neuron (SMN1).
“One in 40 people carry the gene and if two people with it meet, then it’s a 1 in 4 chance that your child will have the condition.
“Grayce is on a treatment for the rest of her life called Risdiplam, and so far she’s taking 3.2ml – a dose that will go up as her weight goes up.
“I’ve been campaigning like hell – I went with a banner to the Scottish Parliament to raise awareness and hopefully get this country to start screening for it.
“Last year I did the Edinburgh Kiltwalk and raised £2,000 and also did a raffle with Hays Travel where we raised £1,500 which was matched by the company.
“Grayce turns two tomorrow – with the treatment we’ll hopefully be able to get her to walk in a year or two, but right now she uses a wee walking frame and a wheelchair.
“If they just screened for this condition during pregnancy, we wouldn’t be in this position now.”
At the time of writing, the Pearson family has so far raised £255 of their £2,000 target.
If you wish to donate you can do so at: https://www.justgiving.com/page/tony-pearson-1731700656382?utm_medium=FR&utm_source=C
