Please Support Gracie's Battle With MED13L
Donation protected
Hi, my name is Craig Carr, and I'm Gracie's Father.
Gracie is 21 years old but is approx 3-4 yrs mentally and physically. She has a rare Neurodevelopmental Disorder called MED13L.
What is MED13L:
MED13L haploinsufficiency syndrome is a genetic syndrome that causes intellectual disability, speech problems, and behavioural problems. People with the syndrome usually have distinctive facial features, such as eyes that slant upwards, a flat nasal bridge with a bulb-like tip, a very small chin (micrognathia), large and low-set ears, and a broad forehead. Most children with the syndrome have poor muscle tone (hypotonia) and may take longer to learn to sit and walk independently (delayed motor skills). Some babies with MED13L haploinsufficiency syndrome are born with heart defects, which may be mild or severe. Other features may include short stature, cleft palate, problems with coordination (ataxia), and recurrent seizures (epilepsy).
Currently, there is no cure or specific treatment for MED13L haploinsufficiency syndrome. Treatment depends on the types and severity of the medical, developmental, and behavioural problems affecting the person with the syndrome and may include heart surgery and therapies such as speech, occupational, and behavioural therapy.
Our Story:
Began 21 years ago when we were told to sit down. We were told our Daughter would never walk or talk! That set in motion a course that essentially saw my wife putting her life on hold to support Gracie and her development.
This superhuman effort on her part is exhausting, thankless and never ending. It's done because a Mother's love knows no limit. But it takes a toll, nonetheless.
This recently saw me put my business on hold for a period of 5 weeks to participate in a Reality TV show. The prize could have been life-changing in the ongoing support of Gracie. As well as provide some much needed respite for my Wife.
That was not the outcome. In fact, only after the show was our story in support of Gracie shared with the public:
So our fight for Gracie goes on.
Why we're asking for help?
While for the majority of Gracie's life we have not received a cent, she does get some support from NDIS. It is not nearly enough.
- Immediately we've been told we need to replace her wheelchair! "Wheelie" as Gracie calls her.
- But more importantly, she is suffering because she doesn't get support from others of her age. She is too old now and no longer able to attend her "special needs" school, which offered her so much support.
- We've been told some time with others her age in a facility that cares for kids with special needs and allows them to stay for a weekend under complete care and supervision, would help her a lot.
- This is nowhere near covered in her package and is extremely expensive. But how do you put a price on something that may benefit your child.
Anything would help!
What we are asking could help cover the costs of her new wheelchair and a couple of weekends under care.
This would give Mum some much-needed rest as well.
If we receive anything over what we've asked for we plan to send it to the MED13L organisation to go towards further research and awareness.
We really appreciate any help you can provide.
Organizer
Craig Carr
Organizer
Minyama, QLD