Family Stories

Family Insight 1 - Alexander

AlexanderAlexander was born with a rare syndrome called Apert’s Syndrome. This syndrome comes from as random gene mutation which causes the premature fusion of hands, feet and certain skull bones, and prevents the brain from growing normally.

His nasal passages were closed at birth and a tracheostomy was inserted to help him breathe. Alexander has just gone through his first Syndactyly Release Surgery which gives him an extra digit on each hand. He will also be going for Fronto Orbital Advancement surgery on his head in November. These are but two of the many surgeries he will have over the next 18 years.

The Social Worker at Princess Margaret Hospital informed us about Hannah’s House and helped us in securing a registered nurse in December last year.

AlexanderAs I was left with significant medical issues caused by my lower lumbar disc popping out during the birth, Hannah’s House was able to provide us with 3 days a week care for Alex. Myself and Alex’s dad were originally caring for him by ourselves as well as working fulltime since September last year when he was discharged form hospital.

The care that Alex receives during the day from Hannah’s House has been life changing, without them we would have had to sell our house, cars and other possessions in order for one of us to stay home and care for him 24/7 as Alexander has a tracheostomy and this requires round the clock care.

Brooke Jeffery, Mother
Alexander, 12 months

Family Insight 2 - Marc

MarcMarc is our beautiful blue-eyed hero. At 5½ months old he was diagnosed with a rare brain malformation called Lissencephaly (Smooth Brain) - sounds a bit like "listen carefully". Marc is now 5 ½ old and he is non-mobile and non-verbal and for the most part, the developmental level of a 3-6 month-old. Marc also has severe uncontrolled (Refractory) Epilepsy, Global Developmental Delay, Cortical Vision Impairment, Chronic Lung Disease, Dystonia, Dyskinesia and feeding issues - resulting in him being fed a tube in his stomach, that bypasses his mouth, as he is unable to eat safely. In the past 12 months, Marc has spent a total of 82 days as an inpatient of PMH and had more than 65 outpatient appointments.

Marc's condition is complex and degenerative. This, and a lack of funding, has meant we were unable to access any regular qualified respite. With the pressure and stress of this unrelenting journey as well as trying to fundraise, I nearly ended up having a complete breakdown. I found I was becoming a "carer/nurse" to not only Marc, but his little brother Anthony, instead of just being their mum. This was heartbreaking but became a way of survival.

MarcDuring a two-week admission in February, Marc’s medical team and our PMH social worker could see how we desperately needed help and in home nursing support. We were in the beginnings of transferring to NDIS and as such had no funding available yet. We contacted Susan at Hannah's House asking if they would take us on and provide funding and an RN until our NDIS funding was approved. Once we were home, Susan came out and met with us (and it was so easy, she was so kind and she "got" our situation and Marc's journey). A week or so later our amazing nurse Liz was at our house for respite and support 2 days per week. This has been a complete godsend and has saved me from completely falling apart. She is a part of our family now and both Marc and Anthony adore her - as do we.

Having Liz to care for Marc and support our family has meant I have been able to be a mum again. I have also been able to spend time with Anthony doing things I wouldn't previously been able to do and giving him my 1:1 attention. Marc has also been able to get the 1:1 attention he deserves and needs - that is more than just the medical, therapy and care essentials. I know this has made a huge difference to his quality of life and to our family's quality of life. I honestly do not know how I did it before and I could not imagine ever not having this support, Liz or the Hannah’s House Team in our lives.

We truly are forever grateful!

Rebecca Vitigglia-Collins, Mother
Marc, 5.5 years

Family Insight 3 – Baby Phoebe

PhoebeWe found out about Hannah’s House when our baby Phoebe was in PMH. We were told Phoebe was terminally ill and would not survive very long. After a few hard choices, we decided to bring Phoebe home to be with Hayden and I and her two, 4 year old sisters.

When Phoebe was about two months old I started to struggle. With my mum deceased and no mother-in-law or sisters to help, Hannah’s House again reached out to me to offer support.

First we had Kate with us for 6 or so hours a day 3 days a week and she was the best help. I could relax a little and play with my bigger girls while Phoebe was being cuddled and cared for.

After Christmas we got Jodie. By this stage I had cracked and decided to put my big girls into daycare as Phoebe was needing more full on care. Jodie was like a mum to me. I was so comfortable with the care and love she had for Phoebe and I was finally starting to venture out of the house and get some much needed sleep after 3 long months.

PhoebeAs Phoebe’s condition worsened her needs increased. Jodie was there for dressing changes, doctors’ appointments and many other major events. Without Jodie I would not have been able to do most of these things.

In Phoebe’s final week she was placed on a pump to keep her comfortable. If it was not for the staff of Hannah’s House being here for 24 hrs a day doing huge shifts and helping support us, we would most likely have ended up in hospital in Phoebe’s final days. From the beginning we wanted her home and we got that chance to love our baby and have her pass away at home.

Without Susan, Jodie, Neetesha, Liz, Kate and Elise’s [Hannah’s House staff] support, Hayden and I would not have gotten through Phoebe’s journey as a family. No words will ever be able to express how much Hannah’s House helped our family.

Lisa Jury, Mother
Phoebe – passed away
at 8 months April 2017