- S
- J
In 2008, our life changed forever and we wouldn’t have it any other way. We were confronted with a condition that’s never been heard of and puts our daughter in a “group of one” within the country, possibly worldwide.
Our bright and bubbly daughter Mikaela, now 8yo, was born with a very rare spinal condition that required 3 surgeries to fuse the bones in her neck. She now requires surgical intervention on her hips and legs. The resulting condition left her with incomplete spinal damage in her neck and 50% spinal cord compression. She is currently unable to walk and has impaired motor functions in her hands and legs. Her rare diagnosis (which still doesn’t have a name) came when she turned 10mths old, after 4 anaesthetics, 2 MRI’s, 2 CT’s and numerous specialists later. We are so very lucky to have this smiley little face here with us today.
From the age of 10mths to 3.5yo, Mikaela was required to wear a Minerva brace (14mths) and halo brace (18mths) 24/7 that kept her head and neck stable while the bones were fused and the rod/screws were placed. During this period, she was unable to walk, crawl, roll around or cuddle us properly. It was not until the halo came off that we realised she was “floppy like a rag doll” and physical therapy could begin in earnest. For the next 4yrs, Mikaela’s life has been therapy 4- 5 days/wk and she can now roll, sit independently and crawl. Both exhausting and financially draining.
Recent visits to paediatric orthopaedic surgeons have broken the news to us that we had hoped never to hear – Mikaela now requires surgical intervention on her hips and legs. Her recent growth spurt and extent of her spinal cord damage, have started to take-over. Without surgical intervention, her muscles will only continue to tighten and the spasticity will make everyday tasks like dressing, become even more difficult. Her ability to learn how to walk will only diminish. A specialised paediatric orthopaedic surgeon in the US performs a minimally invasive surgery called SPML, along with phenol blocks, that would benefit Mikaela enormously. Unless we find a specialist here in Australia that will perform this type of procedure and our only option is to travel to the US.
We have now created this Go Fund Me page to help fund the associated costs involved in this procedure by June 2017 and just as importantly, the follow up intensive therapy to maximise the surgery outcome. Finding a specialist that understands her condition is very rare, likewise with this opportunity.
Everyone faces adversity differently, and as the saying goes – you never know how strong you are until being strong is the only choice you have. As Mikaela’s parents, we have been fortunate enough to have had some great support so far in being able to provide some kind of normality to our beautiful little girl. Other than her spinal condition she is happy, intelligent and a popular little girl attending a mainstream school. The excellent results that Mikaela has achieved to date are a testimonial to the ongoing efforts of many. We will endeavour to give Mikaela, our courageous little girl, every opportunity possible to get out of her wheelchair and learn how to walk.
We thank you from the bottom of our hearts for all your support.
Kindest Regards,
Peter, Louise & Mikaela
June 2017 Update - Due to a number of reasons, Mikaela has recently had surgery in Brisbane on her legs in lieu of the US. Our fundraising goal has now been reduced to $15k for upcoming therapy intensive courses, including Spinal Cord Injuries Australia sessions and Therasuit therapy. Both of which are intensive courses, costing between $6000-$7500 ea. These courses are imperative post surgery to maximise the effects and results from such major surgery. A total of 10 muscles have been operated on - fascia release and muscle lengthening.
Our bright and bubbly daughter Mikaela, now 8yo, was born with a very rare spinal condition that required 3 surgeries to fuse the bones in her neck. She now requires surgical intervention on her hips and legs. The resulting condition left her with incomplete spinal damage in her neck and 50% spinal cord compression. She is currently unable to walk and has impaired motor functions in her hands and legs. Her rare diagnosis (which still doesn’t have a name) came when she turned 10mths old, after 4 anaesthetics, 2 MRI’s, 2 CT’s and numerous specialists later. We are so very lucky to have this smiley little face here with us today.
From the age of 10mths to 3.5yo, Mikaela was required to wear a Minerva brace (14mths) and halo brace (18mths) 24/7 that kept her head and neck stable while the bones were fused and the rod/screws were placed. During this period, she was unable to walk, crawl, roll around or cuddle us properly. It was not until the halo came off that we realised she was “floppy like a rag doll” and physical therapy could begin in earnest. For the next 4yrs, Mikaela’s life has been therapy 4- 5 days/wk and she can now roll, sit independently and crawl. Both exhausting and financially draining.
Recent visits to paediatric orthopaedic surgeons have broken the news to us that we had hoped never to hear – Mikaela now requires surgical intervention on her hips and legs. Her recent growth spurt and extent of her spinal cord damage, have started to take-over. Without surgical intervention, her muscles will only continue to tighten and the spasticity will make everyday tasks like dressing, become even more difficult. Her ability to learn how to walk will only diminish. A specialised paediatric orthopaedic surgeon in the US performs a minimally invasive surgery called SPML, along with phenol blocks, that would benefit Mikaela enormously. Unless we find a specialist here in Australia that will perform this type of procedure and our only option is to travel to the US.
We have now created this Go Fund Me page to help fund the associated costs involved in this procedure by June 2017 and just as importantly, the follow up intensive therapy to maximise the surgery outcome. Finding a specialist that understands her condition is very rare, likewise with this opportunity.
Everyone faces adversity differently, and as the saying goes – you never know how strong you are until being strong is the only choice you have. As Mikaela’s parents, we have been fortunate enough to have had some great support so far in being able to provide some kind of normality to our beautiful little girl. Other than her spinal condition she is happy, intelligent and a popular little girl attending a mainstream school. The excellent results that Mikaela has achieved to date are a testimonial to the ongoing efforts of many. We will endeavour to give Mikaela, our courageous little girl, every opportunity possible to get out of her wheelchair and learn how to walk.
We thank you from the bottom of our hearts for all your support.
Kindest Regards,
Peter, Louise & Mikaela
June 2017 Update - Due to a number of reasons, Mikaela has recently had surgery in Brisbane on her legs in lieu of the US. Our fundraising goal has now been reduced to $15k for upcoming therapy intensive courses, including Spinal Cord Injuries Australia sessions and Therasuit therapy. Both of which are intensive courses, costing between $6000-$7500 ea. These courses are imperative post surgery to maximise the effects and results from such major surgery. A total of 10 muscles have been operated on - fascia release and muscle lengthening.