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Jaelyns Farewell Fund

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Hi this is Jaelyn .
Jaelyn was born 18/7/17 at GCUH all medical staff have been puzzled by Jaelyn from the start my nuchal screen at 12 weeks showed a 1-4 chance for trisomy 18 (Edwards syndrome).
I was referred to Maternal fetal medicine at GCUH where we did a cvs which came back clear also did a amino wich came back clear however her hydronophrosis (enlarged kidneys ) where a major issue.
We were monitored through MFM fortnightly then weekly until the induced me at 38wks .
Jaelyn was believed to have trisomy 18 by all the medical staff as she had a lot of dystrophic features that are relevant to the syndrome she won't orally suck and has a weak airway , so she was put on NG feeds.
She had a skin biopsy done that also came back clear all doctors where still saying she wouldn't make it past two weeks.
We took her home doing NG feeds when she was two weeks old and was told good luck but she will be lucky to live very long .
At 7 weeks old I awoke to Jaelyn grey and lifeless in her cot where we rushed her to LBH were the resuscitated and intubated her . She aspirated on her own vomit as she could not clear it properly. We were then air lifted to LCCH in Brisbane where we underwent a lot of extensive tests .
Jaelyns brain in underdeveloped in parts (corpus collusum,and brain stem) , she has severe to profound hearing loss in both ears and her eyes have underdeveloped optic nerves for her eyes ( she doesn't blink or close eyes) .
Jaelyn can't clear her own airway and needs constant suctioning to clear her saliva to stop her from aspirating again.
She is also on TPT feeds(trans polaric) wich it bypasses stomach and delivers her feed into her small intestine to stop her refluxing. Her feed is done continuos.
She has a 11mm ASD wich will eventually need surgery ( they don't know if her life and body could handle the surgery) , she has a PDA present and also Pulmonary hypertension . She is on meds to control the fluid surrounding her heart as well.
She also has her enlarged kidneys where her right one does not have any function and her left is dialated due to taking the function of right (constant monitoring for this to) . She can't move her limbs like any other baby as well she is unique and requires a lot of medical help .
She is on home oxygen as well and is dependant on having it .
It has been a battle between me and doctors about resuscitating if she was to need to again as they believe we should due to her life deteriorating I have hope that she will fight and be with us longer than what they believe she has made to 11 weeks now and they didn't think she would make 2 . She defies all odds.
We are having troubling getting funds that we require to support her medical needs .
But I can't see my life without her
While away she was diagnosed with a case of life limiting Cerebral palsy with all these underlying conditions. Any help that can be donated will be greatly appreciated.


Organizer

Krystal Cottam
Organizer
Booyong NSW

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