A ray of sunshine for siblings of children with disability
Megan and Adam’s daughter Lexie has a disability: Smith-Lemli-Opitz syndrome (SLOS). It can sometimes be hard for her older sister Immi – but a monthly support group makes all the difference.
“Immi loves attending Social Siblings. It's time away from the crazy of the home environment where she can relax and interact with other children who understand the difficulties and pressures of having a sibling with a disability,” explains Megan, mum to Imogen (8), Lexie (6) and Emily (3). “Immi gets attention and social engagement which is often lacking when her special needs sister is around – Lexie's needs and meltdowns prevent us going out as a family and take away time to focus on Immi.”
Supporting the siblings of children with disability
The Sunshine Butterflies Social Siblings program is a monthly support group providing social and recreational activities to the siblings of a child with disability, funded through the Foundation’s Community Grants Program. The group helps kids form new friendships with others who really understand what their daily home life is like, and have fun without the guilt of knowing their sibling might not be able to join in the same activity.
“Learn to Surf lessons were hugely successful with every child giving surfing their best go, gaining confidence in the water and taking away a new hobby,” relates Lucy Mills from Sunshine Butterflies. “Most of the children have never tried surfing before so this was a great opportunity for them. We’ve also had an Easter egg hunt and lunch, and an action-packed day of rock climbing and mini golf."
“Any shyness that the children had in the beginning is now gone and friendships have been formed.”
Megan’s story: caring for a child with Smith-Lemli-Opitz syndrome (SLOS)
“Our middle daughter Lexie was diagnosed at 11 months old with Smith-Lemli-Opitz syndrome. SLOS is a rare metabolic disorder caused by a mutation in the DHCR7 gene on chromosome 11. This gene codes for an enzyme that is involved in the production of cholesterol. People who have SLOS are unable to make enough cholesterol to support normal growth and development.
“Cholesterol is an essential component of the cell membrane and tissues of the brain. A person who can’t make enough cholesterol will therefore experience poor growth and developmental delays. People with this disorder may also have a range of physical malformations (such as extra fingers or toes) and problems with internal organs (like their heart or kidneys)."
“Lexie is very small and skinny for her age. Lexie took her first steps at age 4 and is now walking for short periods, albeit inconsistently. She is able to crawl which is wonderful but makes outings to parks or day programs a challenge as she has to crawl around on the ground/floor.
"Lexie isn’t yet talking or able to communicate her needs or wants. She also has autistic tendencies/behaviours. Lexie is only just learning to eat foods as she has such poor oral motor skills so she consumes medical foods (Forticreme, Pediasure, Ensure and Fortini) which look like chocolate custards and vanilla milk. These are nutritionally complete and make up 95% of her diet.”
Shining the spotlight on Immi
“Immi loves school and plays netball, enjoys playing with the neighbours after school, and riding her bike or scooter. Immi is a sensitive soul and like a mini mum. She is so caring and mature beyond her years. She is always cheering Lexie along and supporting her to develop new skills.
“Adam, the girls and I moved to the Sunshine Coast from Sydney two years ago. Immi has experienced some unkind words from school peers since moving to a new school. Her peers were unsure of Lexie and said she was ‘weird’ after witnessing her meltdowns at school pick up. Immi is so inspirational and took it all in her stride, choosing to educate her classmates about SLOS. She is very accepting of people's differences and uniqueness and makes sure to include everyone in play situations."
“Social Siblings is non-judgemental, run by lovely carers who get in and have fun too. Immi doesn't feel nervous about going or anxious like she would in regular outings, even when she doesn't know other children going. It's a great time for her to relax and let down her hair.
“My three beautiful girls fill our lives with joy. Days are busy but our hearts are full.”
About the Community Grants Program
Twice every year the Sisters of Charity Foundation provides grants of up to $15,000 to small not-for-profits across Australia that use clever ways to fight poverty, loneliness, suffering and oppression. We rely on the generosity of supporters to fund our Community Grants Program.
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