Why brave Asher, born with very rare condition, and his family are an inspiration to others
ASHER Holland has a very rare condition ‒ MeCP2 Duplication Syndrome ‒ but he and his family are not allowing it to prevent him from having as full a life as possible.
Rouse Hill
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TRIVIA NIGHT
Why: Asher Holland has the MECP2 duplication syndrome, characterised by intellectual disability, weak muscle tone, feeding difficulties, poor or absent speech, or muscle stiffness
Aim: To help upgrade the family car to handle his wheelchair easily
Theme of the night: Great characters — come dressed as a character from a book, TV, movie, comic or game
Includes: Silent auction
When: Saturday, August 12, at 7pm
Where: Rouse Hill Anglican Church, cnr Windsor and Mile End roads, Rouse Hill. Entry off Adelphi St
Tickets: $20 ($5 under-16s), includes door prizes
Details: Phone 0425 233 783 or email bredin@bigpond.net.au
ASHER Holland has a very rare condition ‒ MeCP2 Duplication Syndrome ‒ but he and his family are not allowing it to prevent him from having as full a life as possible.
The nine-year-old Rouse Hill boy was diagnosed with the condition soon after birth and not long after the sudden death of his brother Elijah. The Hollands now donate books to The Ponds School in memory of Elijah who attended the school.
At that time, there were only 80 known cases in the world, making it a journey into the unknown not only for parents Liam and Allison Holland but also for his doctors.
The Hollands, who moved from Newcastle when their son was diagnosed, are brave and positive about Asher’s progress, helped no end by a very strong family, church and community network.
The Rouse Hill Rotary is one of their champions and is fundraising to help the Hollands purchase and modify a vehicle for wheelchair access. They are holding a trivia night on August 12 at Rouse Hill Anglican Church from 6.30pm.
Asher’s cheerfulness and love for anything spinning — this includes the washing machine and vacuum cleaners — lifts the spirits of his parents and those around him, with The Ponds Special School staff helping his progress.
“Asher was five months when Elijah died of the same condition,” said Mr Holland, a pastor with the Salvation Army.
“He is pretty good this year but last year was really tough because he was in the ICU at The Children’s Hospital at Westmead when his left lung collapsed.
“Asher loves people and anything to do with spinning, including the swings and merry-go-round.
“He walks using a walker but needs support.
“We like to spread awareness of his condition and provide support where possible to other families in similar positions, because the community has been so good to us.”
Mr Holland said the earlier years were the hardest because neither they nor the doctors knew much about the MeCP2 syndrome.
His condition requires a combination of drugs because he suffers from epilepsy, autism, global development delay, hypotonia (low muscle tone), chronic constipation and, most worryingly, a compromised immune system. He can go into septic shock within minutes.
In addition, Asher’s knees pop in and out when he walks, he has dystonia in his ankles (severe floppiness and stiffening of his muscles), a portacath because his veins can’t take any more cannulations and a G-Tube inserted into his tummy.
“Asher is a happy kid and even when he was in hospital with a collapsed lung last year, he managed to smile,” Mr Holland said.
“The staff at the Children’s Hospital are amazing and so considerate.
“Asher inspires us daily and really is a super kid with determination and spunk to boot.
“An amazing part of our story is the people and community we have met along our journey and one of those people was an amazing lady, Vicki Bredin (she died suddenly last year), from the local Rouse Hill Rotary who wanted to do something extra for Asher.”
Mrs Holland is a full-time carer for Asher and also runs a business helping people in Bangladesh and Nepal produce and sell handmade goods as a part of an ethical and fair trading network, The Little Sparrow.
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