Before Cheyenne was born, Irene and Brad were given the diagnosis that their future daughter would be born with down syndrome and have a heart condition.
Irene was shocked, but went into mother mode and thought, ‘No, we can do this and she’ll be okay.’
Cheyenne lives with numerous complex health conditions including down syndrome, congenital heart defects, cystic lung disease, high blood pressure which affects the arteries of the heart and lungs, low muscle tone, sleep apnea, global learning delay and hearing loss.
Down syndrome is a genetic chromosome disorder causing development and intellectual delays.
She was born with two holes in her heart and a major leaking arterial valve. There’s been very stressful times for Cheyenne and the family. When Cheyenne was only 5 weeks old she struggled to breathe and started turning blue. She was given a feeding tube and regular checks to prepare her for heart surgery before she was six months old. She has been in and out of Perth Children’s Hospital (PCH) for numerous surgeries and medical treatment to stay alive.
Cheyenne struggles with swallowing and severe gagging reflex, resulting in a feeding condition known as severe oral aversion. She’s aspirated many times requiring numerous trips to PCH Emergency Department. She sees a feed team consisting of an occupational therapist, speech therapist and dietitian to continue to develop her eating skills and in the meantime relies on being peg fed.
Cheyenne has a cystic lung condition and severe pulmonary hypertension that means the blood vessels in her lungs are very narrow and damaged resulting in slow blood flow. This makes her heart work harder to pump blood through her lungs. She relies fully on her parents to survive, including having an oxygen concentrator at home and oxygen tank to go out and about.
Despite a challenging start, Cheyenne is happy, smiley, friendly and determined. She loves reading books, dancing to music, walks in the local park to see the dogs watching ABC Kids, Disney movies, playing with her favourite toys and her big 14 year old brother Kynan.
Though her challenges continue, Cheyenne and her family have been supported by numerous Telethon beneficiaries to help give her the best life possible.
Ability WA gives Cheyenne access to occupational therapy, physiotherapy, speech therapy, sleeping team and a dietitian to help with her feeding and movement.
As they navigate these challenges, Irene was referred by PCH for carer services and support to Hannah’s House.
“Life is difficult with doing everyday normal routines, because Cheyenne is immune compromised with a respiratory condition. We can’t take her out to crowded places and I can’t take her to the shops. Carers from Hannah’s House look after her so I can go and do those every day normal things”, acknowledges Irene and appreciates the support from carers to help with Cheyenne’s medication, feeds and care.
Cheyenne has frequent appointments at Perth Children’s Hospital to see a number of specialists and get her feeding machine and life support equipment regularly updated to keep her alive.
Through Down Syndrome WA, Cheyenne and Irene now have a community of friends from the playgroup, who also care and make sure they are doing okay. And the very special team from Heart Kids are there to support her every step of the way during the long hospital admissions.
Thanks to the generosity of West Australians, Telethon has been able to fund grants to these organisations, so that Cheyenne and her family can have support, including equipment and therapy to keep her healthy and strong.
“Without Telethon funding to the beneficiaries that support Cheyenne, my daughter’s physical development would be extremely delayed even more. Without your help our daughter wouldn’t be the little miracle and happy child that she is today”.
You can donate today at telethon7.com/donate