Jenna and Jayda and Rivvah

My Beautiful Children

They say it takes a village to raise a child.  So what does it take to raise a sick child? What if that sick child had a sibling who was also sick?  What if the disease was slowly taking their lives, and there was the gene that was found proved no help for treatment.  That there were only . What does it take to raise that child?

 

Jenna and Jayda

 

Two beautiful sisters who were born with a genetic disease that has not been seen anywhere else worldwide.  They have been through endless operations and procedures, have had DNA, skin, and Liver sent overseas to try to help find a diagnosis, but nothing anywhere.  Jenna has spent over 18 months living at the hospital, and has now had a liver transplant.  Jenna developed pulmonary edema, and an enlarged heart, and we nearly lost her two days after transplant.  She has spent many nights with one complication after another, causing her to be attached to so many lines just to keep her alive.  Jenna then continued becoming quite ill post transplant and is now in chronic kidney failure.  Unlike normal kidney diseases where they hold too much, hers looses everything.  She now requires so much medication to try to keep her body functioning that even an adult would find it hard to keep up.  Due to severe malnourishment of her being unable to absorb what she needed  she went from being the fastest in the class to needing help to get out of bed. Her intense physio and hydrotherapy is neccessary to keep her moving and to help her to regain the strength she used to have.  Jenna used to be the perfect example of how children can eat properly and is now fed through a tube in her belly, for up to 14 hours a day.

Jayda turned eight in September and for her birthday she was in end stage liver failure.  The pain brought her to tears everyday, and could barely stay awake longer than an hour.  A month after her birthday the disease nearly took her from us when she had a severe intestinal haemorrhage.  She was haemorrhaging as I held her, and required two ambulances and a helicopter to get her to Royal Children's Hospital Melbourne, where we weren't sure if she would make it through the night.  This then happened again whilst on the operating table a month later, and had to be resuscitated with blood products and spent weeks in ICU unable to be woken incase she bled out again.  In Dec 2016 Jayda became the sickest child in all of Australia/ New Zealand and was put to the top of the list and received a well needed liver.  The liver she received stayed out of her body and the donors body for so long that it now has permanent damage.  We thought she would need to receive another straight away, but it managed to settle into her body without needing to be replaced.  She went on to fight Pneumonia, ICU delirium,  blocked hepatic artery, and diabetes from the transplant. Jayda also has the same kidney disease as Jenna, and we are doing everything we can to prevent her following the same path.  Both girls when taken out into the sunlight can get flash burns to their eyes from a simple walk along the beach.  The light singes their corneas which causes severe pain, that cannot be treated.

 

Without a diagnosis there is no treatment.  So they treat the symptoms and not the disease.  We never know what will happen next. As parents we watch, we know more, we know the signs, and tell our children that everything will be ok.     If only we really knew that.

Raising a child is difficult. Raising a sick child is overwhelming.  Raising two children with an unknown life threatening disease is unimaginably frightening.

 

if you wish to donate to Jenna and jayda to help raise awareness, and fight for an answer please do or if you wish to help us raise money for our Liver bear project please                             for more information or to buy a                           to help raise money. Thank you

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