To treat their 20-year-old son, a Monmouthshire couple is planning to use the stem cells derived from the umbilical cord blood of their expected child.
Julian and Joanna are expecting their baby in September, their soon to be newborn son is already named Rhys, and his cord blood will be a match for the 20-year-old Michael.
41-year-old Julian is the biological father of Michael. Joanna, who is 27, is Julian’s current partner. Despite Joanna not being Michael’s biological mother, the cord blood from Rhys will still be compatible.
Since the treatment is illegal in the UK, the family will travel to the United States instead.
Since the illness was diagnosed, Michael has suffered from muscle wastage and experts believe the cells could reverse the damage.
The plan is to fly stem cells to Newcastle University in Boston after they have been extracted and frozen from baby Rhys’ umbilical cord blood. Once in the Boston, the cells will be implanted into Michael’s spinal cord.
Without treatment Michael would not live to see his 21st birthday the doctors said.>
The knowledge that stem cells could be used to treat motor neuron disease came to Joanna’s attention when she was researching on the internet while she was six-weeks pregnant.
She said: “Mike’s best chance is to have cells from a donor who is a close genetic match. The best he is going to get is from his own brother even though he is not born yet.”
“To get a match otherwise could take three or four years and Michael doesn’t have years, he only has months.”
“It’s a race against time but Rhys will have a DNA link. We know it’s a long shot and we are all hoping against hope.”
Julian said: “This disease is meant to affect old people. Not my young and healthy son.”
Michael suffers from extreme fatigue and is losing mobility in his hands as well as the rest of his limbs.
The Motor Neuron Disease Association (MNDA) say most sufferers die within two to five years of diagnosis – with half dying within 14 months.
Julian said: “When doctors first diagnosed Mike, none of us knew what it was.”
“Then when we did some research, we couldn’t get our heads round it. This disease is meant to affect old people. Not my young and healthy son.”
“It would be just amazing if little Rhys saved Michael. Rhys will be our miracle baby.”
Motor neuron disease tends to affect men slightly more than women and is most common among people aged 50 to 70. In the UK, the condition affects about 5,000 individuals.
The nerve cells which control muscle activity begin to breakdown causing the progressive disorder.
Symptoms of the disease include difficulties breathing, swallowing, and speaking, as well as the loss of mobility and muscle-wasting.
In the U.S. and Canada, motor neuron disease is being treated with stem cell therapy.
Since doctors are split on its effectiveness, it has yet to be approved by UK health authorities.
A spokeswoman for the MNDA said: “We are not for or against the treatment but it is at very early stages and not proven that it can have any effect on motor neuron disease.”