Parents from North End call on NHS to provide life-prolonging drug for baby
THE parents of a baby with a condition which causes deterioration to his nerve cells are calling on the NHS to provide a drug which could prolong his life.
Little Tyler Hadley has type one spinal muscular atrophy (SMA) – a genetic condition which affects his muscles, limiting his movement.
At the moment the 11-month-old is having private treatment in France as part of a drug trial.
But his parents Lisa Money and Louis Hadley, from North End, want to see the drug available on the NHS.
Babies such as Tyler with the most severe type of SMA, which occurs when both parents are carriers of the gene, rarely survive more than two years but Lisa and Louis hope the drug will give him more time.
Lisa, 26, said: ‘When we found out last December Tyler had SMA, we were devastated.
‘We didn’t know anything about the condition. We realised he wasn’t developing as quickly as he should but we never expected this.
‘SMA affects his muscles and nerves so he cannot move a lot. He needs physiotherapy on his legs and arms to stop his muscles seizing up. Day-to-day it is a struggle.’
Since the diagnosis, Tyler has been in and out of hospital with breathing problems and stopped breathing last week for 15 minutes while getting physiotherapy.
Thankfully, the physiotherapist was able to do CPR until the ambulance arrived.
Lisa added: ‘We have been getting treatment at Queen Alexandra Hospital and Southampton General Hospital and they have been really supportive.’
After learning more about the condition, Louis and Lisa started looking at possible treatments and saw a drug was being trialled in Europe.
The drug, nusinersen, has already been made available in America.
As part of the trial, Tyler has had three injections in Paris but unless it is approved by health authorities, his treatment will stop.
Now Lisa and Louis are calling for nusinersen to not only be accepted as a treatment but to be available on the NHS.
Louis, 28, said: ‘The injections will help prolong his life. It could make a real difference.
‘We know it is a fairly new drug so the proper tests need to be done, but we hope it is looked at and approved soon.
‘There are a couple of hospitals in the UK who provide it, but it is only available to a few babies because it’s a trial.’
A spokeswoman from the National Institute for Health and Care Excellence (Nice), which recommends treatments for the NHS, said: ‘I confirm that Nice has been asked to appraise the clinical and cost effectiveness of nusinersen for treating spinal muscular atrophy. The appraisal is in early stages.’
Despite the trips to hospital, Tyler is a happy baby.
Lisa said: ‘He is always laughing and smiling. He just lights up a room.’
Fundraising for Tyler
FAMILY and friends of little Tyler Hadley have banded together to show their support and raise money for his treatment.
The 11-month-old is having injections and physiotherapy for his type 1 spinal muscular atrophy (SMA).
His parents Lisa Money and Louis Hadley, from North End, are taking him to Paris, France, as part of a drug trial to help prolong his life.
But the cost of one injection is 1,200 Euros (£1,047) with Lisa and Louis also having to pay for accommodation and travel.
So far, Tyler has had three injections. His fourth has been delayed after he stopped breathing for 15 minutes last week.
A fundraising page has been set up and so far £5,600 has been donated online.
Louis, 28, said: ‘We have been doing lots of fundraising to help pay for the treatment but physiotherapy equipment too.
‘We have organised fun days and a group are doing a 50-mile walk as well.
‘Lisa’s brother is abseiling down the Spinnaker Tower and Tyler’s grandad is swimming Lake Windemere as part of the Great North Swim.
‘So we’ve had lots of support from everyone. We are really grateful for all the fundraising.’
The pair are trying to raise £50,000 as they do not know what future treatment Tyler might need.
They hope £50,000 will pay for extra physiotherapy lessons, treatment for his type 1 SMA and specialised prams and car seats to support Tyler as his movement is limited.
To make a donation visit gofundme.com/tyler-james-treatment-fund.