Emma was recently diagnosed with Addison’s disease. Addison’s is a rare disorder where her adrenal glands are not producing enough hormones that tell her organs what to do. This can be life threatening if not caught in time.
Emma’s life changing journey started several weeks ago, before she was diagnosed with Addison’s. Her mom, Tracy, found her one morning in bed, wearing that favourite pink velvet night dress, not breathing and completely unresponsive. Emma was then airlifted to McMaster Children’s hospital and placed on life support in the paediatric intensive care unit. All of her organs had shut down. She had to be on a ventilator and dialysis for a couple of weeks in the hope her organs would heal enough to start functioning again on their own.
Miraculously, all of her organs started functioning again and as the days passed she was able to move around a little on her own, talk a little, and eventually start eating some solid foods. However, Emma was not out of the clear yet, the doctors discovered there was some slight brain damage along with problems with her muscles. So Emma will need extensive rehabilitation to strengthen her muscles and learn to walk again. She will also need therapy to help improve her speech and brain development.
When Emma finally does come home, she will require extra care. For the rest of her life she will have to take steroids and other medications every day. Whenever she starts feeling sick, such as the flu, fever, or any other sign of infection, she must go to the ER for extra steroids and other medications. Getting sick triggers the disease and she will end up in crisis again if not taken care of promptly.
Since Emma has been in a hospital outside of her home town, Tracy has not been able to work so she could remain by her side. For 8 weeks, Tracy has been there for Emma. Her dad, Andrew, has also had to cut his work hours in order to take care of Emma’s 3 younger siblings, run the household and spend time with Emma when he can. Tracy has been able to stay at Ronald McDonald house while Emma is at McMaster, but when Emma is moved to a rehabilitation centre in Toronto, there is no Ronald McDonald house nearby for Tracy to stay, so unfortunately she must find somewhere else close by, which is an added expense to the family so she can continue to be with Emma.
If you would like to help Emma and her family on her road to recovery, please donate today!!
- Frank & Roxanne Rinaldi
- Ed Learn Ford Lincoln (ELF)
- John Mateljan
- Jane Lupo
Organizer and beneficiary
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