We often scold our kids for the tiniest of mistakes, and complain about mum-life, forgetting that we are more blessed than we realise. This mum's moving post on the challenges of raising a child with special needs, is a beautiful reminder for all of us, to treasure our loved ones.
"I pray for the day I can hear my toddler’s voice. Just one time even", she says.
Mum reveals the challenges of raising a child with special needs
Mummy Samia Mubarak recently wrote an emotional post on Facebook about her 3-year-old daughter, Maryam, who was born with an extremely rare disorder called CHILD syndrome.
"As a parent of a healthy 5-year-old and a 3-year-old who was born with an extremely rare syndrome who is currently vent dependent and fed through a GJ tube, I have seen and experienced firsthand 2 distinctly different images of being a mum", she writes.
"And I have to say that as mothers of healthy children, sometimes we can take advantage of that blessing and overlook the bliss we are in."
"Any Mum: This kid is always hungry. I just fed them and they’re saying they want to eat again."
"Mum of special needs child: I pray for the day I can see my child eating with a spoon and being able to swallow. Seeing them tolerate a lick of ice cream for the first time without gagging and throwing up today absolutely made my day."
"Any mum: My baby moves too much I’m so tired chasing after them."
"Mum of special needs child: I pray your legs are strong enough one day to just stand up on your own, for the day you can take one step, and for the day you can crawl around without tangling all these wires that are helping you breathe."
"Any mum: I don’t know how I’m going to handle a long flight with my baby. It’s way too long of a flight to be on with them."
"Special needs mum: I hope one day I can actually take my baby on a plane and travel outside the city with them, let alone the country, and have an actual vacation."
"Any mum: My kid won’t ever stop rambling"
"Mum of special needs child: "I pray for the day I can hear my toddler’s voice. Just one time even."
Our eyes welled up reading this post, and made us a little extra grateful for all the joys we have.
"Be thankful you can lay down next to your baby at night. Be thankful you can feed them. And be thankful you can hear their voice", says Samia.
Click here for Samia's full post on Facebook.
CHILD Syndrome
CHILD syndrome stands for "Congenital hemidysplasia with ichthyosiform erythroderma and limb defects". It is a congenital disorder - the symptoms may be present at birth or may develop during the first few weeks of life, and continue for the lifetime of the patient.
CHILD syndrome is seen almost exclusively in females. It is an extremely rare disorder with only 60 recorded cases worldwide.
Symptoms of CHILD Syndrome
The main symptoms of the syndrome are in the the acronym CHILD. The symptoms usually appear at birth or shortly after birth.
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CH = Congenital Hemidysplasia
One side of the body, most of the time the right side, is poorly developed. The right ribs, neck, vertebrae, etc. may be underdeveloped and the internal organs may be affected.
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I - Ichthyosiform Erythroderm
At birth or shortly after birth, there are red, inflamed patches (erythroderma), and flaky scales (ichthyosis) on the side of the body that is affected. Hair loss on the same side may also be possible.
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LD - limb defect
Fingers on the hand or toes on the foot of the affected side may be missing. An arm or leg may also be shortened or even missing.
To diagnose the disease, a skin sample is examined under a microscope. An X-Ray of the trunk, arms, and legs would help to detect underdeveloped bones. A CT scan would help detect problems of the internal organs.
There is currently no treatment for CHILD syndrome. Any treatment would target the symptoms present.
ALSO READ: Singapore dad shares how a rare disease left his children bedridden and tube-fed
(Source: Wikipedia)