A Scots dad is desperate to get the help his baby girl have a good quality of life after being diagnosed with a 1 in 10,000 rare genetic disorder.
Danny Fitzgerald, from Dunfermline, Fife, and his wife Brooke, were left "shocked" and "heartbroken" when they discovered their 11-week old daughter Violet had type 1 Spinal muscular atrophy (SMA) - the most severe prognosis for symptoms and life expectancy - just a few weeks ago.
Baby Violet could be left with weak muscles and movement problems, as well as feeding and breathing difficulties, that she will have to battle with for the rest of her life.
Danny, 32, told the Record: "Brooke had an uncomplicated pregnancy and delivery, and when Violet was born nobody noticed anything and she seemed perfectly healthy, but they don't test for SMA.
"But when she was five weeks old we noticed the strange positioning of her arms and she generally had less movement than other newborn babies.
"We got her checked over and the doctor send off blood samples just in case, and because there is a 1 in 10,000 chance we were trying to tell ourselves there was no way she would have SMA.
"After a heartwrenching two-week wait we found out, unfortunately, Violet has been very unlucky and she might not survive beyond the first few years of her life."
Danny and Brooke, who live in the Cayman Islands, had to move fast after the diagnosis to give Violet the best possible chance with early treatment.
With no specialist able to help there, they got on a plane to Philadelphia in the United States, where Baby Violet was given a $2.2m ground-breaking drug called Zolgensma on February 15, which will hopefully keep her from needing feeding tubes and ventilators for the rest of her life.
"We don't know what will happen now, babies with type 1 rarely survived beyond the first few years of life, but in recent years outcomes have improved with this still very new treatment," Danny said.
"It's crazy to think we had a healthy pregnancy and baby and then a few weeks later we found out she had this extremely rare disease.
"Without knowing me and Brooke carry the SMA gene but there is a 2% chance you have it - together that makes a 25% chance, but even then you might have a perfectly healthy baby.
"We just wished SMA had been tested during pregnancy so Violet could have been treated earlier.
"Our private health insurance would not pay for the treatment even though we pay hundreds of dollars a month, luckily our government stepped in to support Violet financially.
"If they didn't pay we thought we were going to have to Scotland because we just don't have that money.
"We'll be staying in the US for the next few months while they monitor Violet and then hopefully we will be able to go home."
Danny's parents and family in Scotland have been left stuck unable to meet Violet and have set up a fundraiser for the Fitzgeralds that has raised an incredible £105,000 in just a week.
"Despite the help from the government someone is potentially going to have to care for Violet for the rest of her life and health insurance is not going to cover all of that
"I moved to the Cayman Islands to work in diving but because of Covid, I've had to take up a job as an AV technician and Brooke is a law secretary so we just don't have that money.
"We're off work right now but we still have to pay our bills so there's a lot of financial uncertainty ahead. We don't know how we're going to thank all the people who have donated."
To donated visit: https://www.gofundme.com/f/violetSMA
