RESIDENTS in Thurrock, including former neighbours and friends are being asked to help a pair of one-year-old twins and their family after they were diagnosed with a life-changing illness that will require treatment for many years.

Raffy and Siddy, are identical twin boys who currently live in Benfleet, but who are steeped in a Thurrock background. A day after their first birthday they were diagnosed with Spinal Muscular Atrophy type 1 (SMA 1), a rare progressive neuromuscular genetic disease that, if left untreated, is likely to be fatal before they are two.

And even with treatment, the pair and their family face a long and hard road ahead. So an appeal has been launched to help raise money to access dual treatment, so the twins receive the best physiotherapy and treatment and their family cope with the huge financial burden to come.

The boys' mum and dad, Jenna and Steve Whyman used to live in Linford, where the boys older sister Marnie was born three years ago, before they moved to Benfleet around 18 months ago.

Jenna has told how she and Steve became aware of the problem, saying: "We noticed that the boys were not meeting typical milestones like holding their heads, rolling and sitting unaided. They also had a constant rattly chest that wouldn't clear.

"We took them to the doctor's surgery, hospital and contacted the health visiting team but each visit ended with the same outcome - being told that the boys would catch up, they were lazy because they were twins and I was even told that I was being neurotic.

"The boys were given lots of antibiotic courses but none of them worked as their chesty rattle was actually due to respiratory weakness and their lungs were deteriorating - a common symptom of SMA 1. After being knocked back by medical professionals for 10 months, I finally got a GP to take me seriously and the boys were referred to a paediatric consultant at the local hospital, only to be told there was a six-month waiting list.

"I wasn't happy with that and fought hard for an earlier appointment, which has proved vital. Otherwise, we might not be where we are today given that SMA 1 is fatal before two years old. At that appointment we had genetic testing, and we finally received the results that confirmed the real illness a few weeks later."

What is SMA 1?

Most people are born with two genes which produce a protein called Survival Motor Neuron 1 (SMN1) & Survival Motor Neuron 2 (SMN2). These proteins allow the muscles to move. The human body is supposed to have two copies of SMN1 which is the main source for producing this protein.

Jenna and Steve only have one copy of the SMN1 gene, and the children inherited the absent copy from both of them, so they were born without any copies of SMN1. Without SMN protein to control muscle functions, the motor neurone cells die causing muscle function to become so weak and robs children of being able to move, eat and breathe, and the severest form (type 1) can be fatal in early years without treatment.

For Jenna and Steve, the fate of their sons has become a living nightmare. Jenna says: "Every morning we wake up hoping it was just a bad dream, but it's reality. So we have to put on a brave face and a big smile each day for the boys and Marnie, and somehow we just keep going to make sure we have a happy home full of laughter and fun."

Jenna adds: "We have been extremely fortunate that the NHS have provided us with Gene Therapy using a (fairly) new drug called Zolgensma. Zolgensma targets the genetic root cause of SMA by replacing the function of the missing SMN1 gene with a new, working copy.

"Any cells that have already died can't be replaced but going forward any remaining cells should survive, function and be maintained. As it is a new drug, and the twins are the first generation of children to receive this treatment there is no data past six years of age, but those that have received this drug are alive and doing well.

"Mobility issues are still present and it is likely Raffy and Siddy will be in wheelchairs for life. But there have been many gains and some children have even hit new milestones. Historically, this is something that never happens with SMA 1 as it is a progressive disease.

"Myself and Steve are beyond grateful to the multidisciplinary team panel at the NHS who decided the boys were worth saving. Zolgensma has given us a second chance. However, Zolgensma without physiotherapy was described to us like a 'gun without bullets'.

"The twins will require a lifetime of extensive physiotherapy, hydrotherapy, specialist equipment and home adaptions to help them become independent and lead the best quality of life, which the NHS just don't have the funding for.

"So we have set up a fundraising page. The cost of raising one child with a disability can have a great financial impact, so two is going to be very hard. We would be so incredibly grateful for all your support, even the smallest amount will help contribute towards specialist equipment and therapy needs to give the boys the best quality of life."

Jenna is documenting the boys' journey and milestones on Instagram - @warriortwins_sma

 And you can find the fundraising page where you can donate, via this link.