We’re raising money for our friends Kate Johnston and Luke Coe so that they can provide the best care, therapies and therapy equipment for their beautiful 19 month old boy Lachie Coe who has recently been diagnosed with an ultra rare genetic syndrome called MSL3 syndrome, as well as a rare eye disease called Cone-Rod Dystrophy. Lachie is the only known person worldwide to have both of these genetic issues and the family are working tirelessly to research and provide the therapies that he needs but unfortunately, his current NDIS funding doesn’t cover all that is required for his early intervention plan.
There is lot of uncertainty regarding Lachie’s development and it would be nice to relieve Kate and Luke from some of the stress, by removing the added concern that they may not be able to fund enough appropriate care and the therapies he needs.
Lachie currently sees an occupational therapist, a speech therapist for communication and language development (DIR Floortime therapy), a feeding specific speech therapist, a physiotherapist, an ophthalmologist, an orthoptist, a neurologist, a pediatrician, a GP, an audiologist, a surgeon, a diagnostic team at the children’s hospital (including another specialist Dr and a social worker) and will be followed up by a genetics specialist. The more therapies he has accessed the more Lachie’s learning and skills have progressed thus far. His recent MRI results showed no reason as to why he cannot learn and withhold skills, he just needs more assistance and LOTS of daily repetition.
Early intervention is the key to Lachie’s success and the family are eager to do as much intensive therapy (as suggested by the neurologist and the other MSL3 experts) as possible as soon as they can afford to implement it. Right now there is a unique opportunity for rapid learning as Lachie’s brain’s ability to grow new neural pathways is at its peak.
Early intervention will also give Lachie the best opportunity to learn to speak before he loses more of his vision.
So please jump on board and donate whatever you can to support this family and help a very rare gem, Lachie, to reach his full potential!
Please share this Go Fund Me page if you can.
Kara and Blythe xoxo
If you want to more information on MSL3 or Cone-Rod Dystrophy please see below
- Discovered in 2018
- Only about 50 children diagnosed worldwide
- A small “spelling mistake” on the MSL3 gene prevents the genetic information from being able to be read from left to right resulting in the message getting scrambled and a particular protein not being able to be made in each cell of the body
Causes global developmental delay, hypotonia (low muscle tone throughout the entire body), delayed communication and language development, ataxia (motor planning, balance and coordination problems), delayed ability to walk, intellectual disability, feeding and swallowing problems, sensory processing issues and hearing loss to name a few.
- An eye disorder that affect the light sensitive cells of the retina called the cones and rods
- Blurry/reduced vision and blind spots
- People with this condition experience more vision loss over time as the cones and rods deteriorate
- Many people end up legally blind
- Causes extreme photo sensitivity and pain when exposed to sunlight and various lighting conditions (Lachie cannot tolerate any sunlight and remains indoors until sunset or is behind several layers of fabric in his pram which he can’t see through. This means he misses out on typical toddler outings like the park, pools, beach etc)
- Can cause complete colour blindness
- Isabel Lo
- Kirti Nambisan
- Jessica O’Carroll
- Liz O'Carroll
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