On Saturday 28th March Coastal CrossFit will be conducting a fundraiser to help a 2 year old little girl named Madelyn who has cerebral palsy. Currently, Maddy’s parents are selling their personal possessions to fund her ongoing treatments and to buy much needed equipment such as a new wheelchair and with her mum unable to work due to her Maddy’s full time care requirements the family’s financial situation is tough to say the least.
As parents, our hearts broke to hear of this situation and we felt compelled to try to help them out in some way.
The plan is that Chris will be doing 500 Burpees on the last Saturday morning of the CrossFit Open and we are asking that you will sponsor him either through a singular donation or by a per rep amount. Your donations will be anonymous and of course 100% of the money will go to the family. No amount is too small.
So please empty out the coins in your ashtray and stay around after the completion of the last workout of the Open to support Chris (and Maddy) through his 500 Burpee effort.
Here is a more detailed account of Maddy’s situation:
Madelyn was born 7 weeks early and when she was 5 weeks old she became very sick. She was lethargic and wasn’t feeding so we took her to the GP and then a few hours later to the hospital. Within a few hours Madelyn was having seizures and apnoea’s and within 24hours we were watching doctors as they tried to save her life. Madelyn was intubated and put onto life support on the 16th April 2013.
Later we learnt that Madelyn had contracted RSV, Adenovirus and an infection in the brain. The infection in the brain has left Madelyn with significant brain damage. Madelyn is now classified as a cerebral palsy child with seizures and difficulty feeding.
Doctors were unable to tell us what she would and wouldn’t be able to do and said to just wait and see how she goes.
Unfortunately Recently, Madelyn started to deteriorate and become increasingly irritable. This led us to having close to a month stay in hospital while doctors/specialists ran tests to try and find a cause for her deterioration.
Madelyn’s lumbar punctures have shown that she has oglioclonal bands present in her CSF which indicates that there is inflammation in her brain somewhere and they believe that the initial infection has triggered some sort of auto immune condition which has led to the deterioration.
Madelyn has now started on IV immunoglobulin infusions and IV steroids once a month for a week and then home with oral steroids. This treatment will continue for the next few months and then they will review her.
During the deterioration Madelyn has stopped eating orally and now relies on a feeding pump to feed her so she is having surgery to insert a PEG which is a more long term feeding solution than the nasogastric tube she currently has.
We are hoping that this might be the answer to her deterioration and our little girl is able to start healing and progressing again.
