Sea of yellow will help raise awareness of rare condition

Kirsty Drummond (33) from Camelon is inviting all the pupils at Carmuirs Primary to wear the bright colour on September 30 to raise awareness of microcephaly which affects her 13-month-old boy, Alexander.

Microcephaly is a neurological condition in which an infant’s head is smaller than expected due to the brain developing abnormally.

Caused by various factors, microcephaly affects children in different ways.Some have trouble feeding or suffer seizures, while others have learning difficulties, hearing and vision problems or joint deformities.

Little Alexander is registered blind and has problems with his balance.

Kirsty wants to raise awareness of the condition while also raising funds for the hospital that did so much for Alexander.

“You have to take it one day at a time,” said Kirsty.

“It’s difficult because you are unsure of how he will develop throughout his life.

“It took him longer to feed but he can feed – some children with the condition can’t and have to be fitted with feeding tubes.

“He can’t sit up on his own for a long time but he can stand up.

“He can’t walk yet and I know he is only young but it’s his sight that really holds him back because he can’t balance and he doesn’t have the courage to move forward.

“But a happier boy you won’t meet.

“He smiles from the minute he gets up and is really playful with his brothers and sister.

“I really just want to make more people aware of the condition and I am the voice for my son.

“It’s also my way of saying thank you to the neurology department at the Royal Hospital for Sick Children in Edinburgh who have been amazing.”

Kirsty was first made aware of a problem when she was 29 weeks pregnant.

“My older children had been quite big, so I was having a growth scan and they found that the circumference of the baby’s head was 2cm behind what it should be,” she said.

“I felt panic, to be honest.

“I didn’t know if it was something I had done and then there were just tears.”

Alexander was born at 37 weeks by planned caesarean section at St John’s Hospital in Livingston.

Problems were quickly detected with his sight and he was sent for an MRI scan at Edinburgh’s Sick Kids Hospital when he was just six days old.

His sight is now severely restricted and he can only see small specs of light.

Kirsty said she received a massive amount of support from her family and Dr Kamath Tallur, Alexander’s consultant paediatric neurologist at the Edinburgh hospital.

She has also introduced Alexander to new friends through a playgroup at Camelon Education Centre and Windsor Park where he plays with other children who are deaf, blind or have other special needs.

Kirsty said: “My other children – Maddison (6) Jack (5) and three-year-old Brodie – are great with Alexander, very playful and boisterous, although they do know to approach him a bit more gently.”

And it is through Alexander’s siblings’ school that Kirsty is holding her first fundraising and awareness raising event on September 30, which is also Microcephaly Awareness Day.

All the pupils in the school will have the chance to wear yellow for a small donation.

A raffle will also be held, with prizes already donated from the Cladhan, Patricks of Camelon and the Co-op.

“Every time he does something that I have been warned he might not do, it means the world to me,” added Kirsty.

“He said “mum” at five months, just like my other children did, and I just burst into tears because I was told he may not speak.

“You just have to take it one day at a time.”

Anyone who wants to help the cause can visit www.justgiving.com/crowdfunding/kirsty-drummond?utm_id=2&utm_term=NDa b46RGP.