The harsh reality of raising children with rare diseases
When people Women face challenges everyday, in different aspects of their lives.
This International Women’s Day, we should recognise the sacrifices women make and the challenges, hurdles they have to overcome in life. The story of Rubee Ahmad is one that reflects the insurmountable amount of strength, power, resilience, patience and love that a woman can possess.
MOTHER OF TWO SPECIAL CHILDREN
The 41-year-old is a mother to two special children. For Rubee, it was definitely the hardest moment to endure when she learned that her kids were diagnosed with Mucopolysaccharidosis type II (MPS II).
MPS II or Hunter Syndrome is a type of rare disease which is usually inherited and caused by the absence or malfunctioning of certain enzymes. It only affects over 4,000 people in Malaysia.
Commonly known as Hunter Syndrome, Rubee shared that her two boys - Ahmad Adam Sharin and Muhammad Arman Sharin - both now respectively 14 and 10 years old - are however, physically normal on the outside.
“When we learnt Adam suffers from MPS II, it was hard to come to terms with our fate.
“Typically, even with a fever we would worry about their health, what more with an incurable disease,” she said.
Rubee said, no matter how strong a mother is, she admitted it was a really huge pill to swallow.
The first son - Ahmad Adam - was diagnosed 10 years ago when he was only four years old after undergoing a tonsil operation.
What’s even more heartbreaking for the couple, the youngest son Muhammad Arman was also diagnosed with the same disease after he took an immunisation jab when he turned one.
“We thought he (Ahmad Adam) was autistic at that time, he couldn't speak but our concern at that time was the frequent flu he experienced.
“We went to a therapist and even brought him to see a psychiatrist but they couldn't pinpoint what was wrong,” she said.
LOWEST POINT
To say that Rubee took the big news like the strongest mother is an understatement when the feeling of no hope brought her to her lowest point of her life.
“I remember sitting down and feeling hopeless. I didn’t know where to go or how to ask people for help,” Rubee further shared.
Moreover, for Rubee and her husband Sharin Abdul Rahmad, telling both sides of the families was no easy feat either. “I wasn’t ready to tell people that my sons are ill.
“One more thing is it's hard to tell your family because they love them so much so it's hard to explain the situation to them.
“The feeling of helplessness when reading the big words like no cure, no funding, short life. The desperate feeling like if there's nothing, then what's left for me?” said Rubee.
SLEEPLESS NIGHTS
Before Ahmad Adam was officially diagnosed with the Hunter Syndrome, she went through two months of sleepless nights.
“I couldn't sleep because I would search for information related to my kids’ condition,” she said.
STRONG SUPPORT SYSTEM
Despite knowing there was no cure for their sons' disease, Rubee and her husband never had a tiniest intention to stop finding the best treatment for their children.
Talking about support and advocating groups, Autism Malaysia was the first group that Rubee had reached out to before she went to the Malaysia Lysosomal Diseases Association (MLDA).
Apart from offering emotional support to the family, MLDA creates awareness about rare diseases, helping families looking for financial support and advocating for early intervention strategies.
“It was good to know what was happening and to know that we are not alone,” she said.
“But one thing not fun about being in advocate groups is that you build relationships with them. “When a kid we’ve known for a long time passes away, it would mess up our feelings and cause us to overthink about our own situations,” she said.
HARSH REALITY TO FACE
Going through this very difficult challenge, Rubee hopes that no other woman will experience what she went through. Along the journey of raising special children, Rubee shared they have changed her a lot, and she views motherhood and life differently now. “Life is not always about you, but it's the people around you.
“Sometimes I feel the challenges I have are so heavy to carry, but there are still people out there experiencing more difficulties than I do.
“I am still able to give my kids good food, comfortable clothes and a house, and my kids receive treatment,” she said.
As a career woman, she wants to appreciate every single moment she has with her kids and will try her best to give them the happiness they deserve.
