A MOTHER and father say they are trapped in a “living nightmare” after both their identical twin sons were both found to have a rare disease.

Raffy and Siddy Whyman were diagnosed with Spinal Muscular Atrophy type 1 (SMA1) on April 13 – just a day after they turned one.

Mother, Jenna Whyman, 36, and her husband, Steve, say they are putting on a “brave face” to keep going for the children but wake up every morning hoping the diagnoses was just a bad dream.


The Benfleet family, who also have a four-year-old daughter, Marnie, are fundraising to help pay for a a lifetime of extensive physiotherapy, hydrotherapy, specialist equipment and home adaptions.

Echo: Bad dream - Jenna and Steve with Raffy and Siddy and daughter MarnieBad dream - Jenna and Steve with Raffy and Siddy and daughter Marnie

“It's like a living nightmare,” Jenna said. “As parents we never thought this would be our children.

“Somehow we just keep going to make sure we have a happy home full of laughter and fun.”

SMA 1 is a rare progressive neuromuscular genetic disease that, if left untreated, is fatal for young children.

The twins have been born without a gene which produces a protein called Survival Motor Neuron. 

It is needed to make muscles move. 

Echo: Living Nightmare - Jenna watches over her sonLiving Nightmare - Jenna watches over her son

Following multiple trips to doctors and hospitals, the twins were finally diagnosed with the disease after numerous experts had told the family nothing was wrong.

The youngsters are being provided gene therapy by the NHS, using a new drug called Zolgensma,. 

It targets the genetic root cause by replacing the function of the missing SMN1 gene with a new, working copy.

As it is a new drug, they are among some of the first children to receive the treatment, and there is no data past six years of age.

While mobility issues are still present in those who have used the drug, and it is likely we will be in wheelchairs for life, there have also been some positive outcomes for children under the treatment.

“Zolgensma has given us a second chance,” Jenna said. “However, Zolgensma without physiotherapy was described to us like a 'gun without bullets'.

“The cost of raising one child with a disability can have a great financial impact, so two is going to be very hard.”

To donate, visit: https://gofund.me/753738c0