At 16 months old, Hudson weighs just 11lb and mum Tracey Currie wants to ensure his precious time is as pain-free as possible.
Amongst his myriad health problems, Hudson has muscle spasms which cause fabrics to rub on his delicate skin, which then develop into sores.
Now, the family and some friends are raising money to buy a special chair as well as sensory equipment to stimulate him, and ensure he is safe and comfortable.
Exhausted Tracey spends all day and night with Hudson, holding him through the day and sleeping next to him at night. She said: “Most nights he cries all night in pain, some nights we hit lucky and he sleeps.
“For us as a family having a safe, comfortable place for Hudson is key to everything.
“I make every meal with him in my arms, I go through every day on about an hour of sleep.”
Just this week it has been discovered that Hudson is the first ever to be found with a specific genetic mutation and they do not know what the future hold, but geneticists have told Tracey that his life will be short.
In addition, he has hyperplasia optic atrophy in both eyes, meaning he has no sight; epilepsy; and cerebral palsy.
His health troubles started before he and his twin, Quinn, were born, when there were problems with blood and oxygen flow to Hudson’s placenta. Tracey, who is also mum to seven-year-old Theia, and Laythan, five, said: “I was attending the hospital twice a week for ultrasounds as they were concerned about Hudson’s growth. His femur bones were short and they warned me that he may have dwarfism. However his twin was growing normally.”
The boys were born by emergency c-section in May last year and Tracey added: “He was indeed small, 2lbs 8oz, but didn’t need any help breathing or anything at all.
“He went straight to the ward with Quinn and me. We spent ten days in neonatal due to weight loss in both boys and then came home.”
But Hudson was a very upset baby and would not settle, didn’t gain weight and was constantly moving as if in pain. She said: “When he was nine weeks he ended up in hospital in Glasgow, where they treated him for viral meningitis, but still couldn’t get to the bottom of his feeding issues or lack of weight gain.”
Then Tracey mentioned her concerns about his eyesight to a health visitor and tests found he had just two per cent vision.
And despite a daily diet of between 3000 and 5000 calories, the little one struggles to gain weight too. Tracey said: “He feeds constantly and I made the decision to allow a feeding tube to put in, as I couldn’t sit night and day feeding him. But he still failed to gain weight.”
Her older children have been a huge help, however Tracey is desperate to ‘give them back their childhood’.
Life is dominated by Hudson’s medical requirements, and the family have now moved from Lochmaben to be closer to DGRI in Dumfries. Tracey said: “We have appointments four days out of five, sometimes four or five in one day.
“But they have all adapted really well and the love that surrounds Hudson is immeasurable.”
Explaining their fundraising efforts, Tracey said: “We have a chair from the NHS but because of his musical spasm the fabric rubs on his skin and causes little sores.
“Occupational therapy informed us of another chair called the PPod, but it retails at £1000 for a basic, unadapted seat and we need an adapted one as Hudson is so small.”
A crowdfunding page was set up earlier this month and local businesses were asked for donations, which have been raffled off to buy things Hudson needs to be comfortable.
The total stands at £2235, and is set to be boosted by a donation from a car boot sale held at Tesco Extra in Dumfries.
Tracey thanked everyone who donated, gave raffle prizes and bought raffle tickets, and sent well wishes. She said: “He is the sweetest little guy ever, hopefully we can get him more comfortable as it breaks my heart to see him in pain.”
