Providing information and support to families caring for a child with an undiagnosed or rare genetic condition.
With concerns about Hannah’s health before birth, Sarah and her family did not know what to expect or where to turn for support. Hannah was born with a range of symptoms that are part of her rare genetic condition. Terms such as soft cleft palate, hip dysplasia, dystonia, chromosome duplication and deletion, which were once foreign terms, are now everyday language for Sarah and her family.
“It is really hard when you are already overwhelmed by your child’s birth you are full of hormones and emotions and then doctors start reeling off terms that you have never heard of before and you suddenly have to become a medical expert overnight.”
Since initially leaving the hospital after Hannah was born, every aspect of Sarah and her family’s lives has changed.
Feeding Hannah through a Percutaneous Endoscopic Gastrostomy (PEG) feeding tube is now second nature, and Hannah, at the tender age of 15 months, has endured multiple procedures to improve her health.
“Having Hannah as part of our family is a joy. However, we now have to think completely differently in every area of our lives. We also have a three-year-old daughter and need to think about caring for her and her needs and Hannah’s. It makes everything even more of a juggle.”
Hannah and her family have barely had a break between surgeries. Hannah has a compromised immune system, so the threat of Hannah contracting COVID and being admitted to ICU is very real for the family. Hannah has had six general anaesthetics to date for a number of different surgeries and procedures, all in the past nine months.
This is incredibly emotionally draining for Sarah and her partner but is also financially challenging as they juggle and navigate their caring role for other family members when Hannah is in hospital.
We have found that our costs have dramatically increased, not just with the recent costs of living, but with the complex medical care, high cost of medication and intensive therapy that Hannah requires. This has coincided with a reduction in our income, as one of us always needs to be with Hannah.
“I am so truly and very thankful for the SWAN and all they do in supporting myself and our family and all the families they help and support. It’s not an easy road to travel when you don’t know your destination, but it is critical to know you have a good navigation and support team.
SWAN has been incredibly helpful in supporting our family whilst Hannah has been in and out of hospital. Just a phone call to see how I am going can make a difference to my day as I know there is an organisation that genuinely cares for families like ours.”
– Sarah Strachan