Support the Carter Family

I am raising money to help support the Carter family during their heartbreaking journey of caring for my terminally ill niece Harvey.  

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Harvey’s Story by Bec:

We thought our family was complete with the arrival of our beautiful baby girl Harvey on 18th April 2019, the perfect sister to her awesome brother Texas. Initially Harvey had breathing issues and spent the first few days in the nursery, but after getting the all clear we were excited to go home and began settling into life as a family of four. From the beginning Harvey always seemed agitated and cried a lot, however we put it down to being a more sensitive baby than her brother and carried on in our newborn bubble.

Over the next 3 months we became worried as Harvey’s health deteriorated rapidly. She could no longer feed properly, cried all day and night and became very floppy. On 6th August our GP sent us to Women’s and Children’s Emergency where Harvey was admitted and concerned medical staff began to run tests.
Harvey endured five days of countless blood tests, MRIs, EEGs, Lumber Punctures and more.
On 11th August we received the devastating diagnosis that our little girl has Fumarase Deficiency and our whole world fell apart in an instant.

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The disorder and how it affects Harvey

Fumarase Deficiency is an extremely rare genetic disorder that affects the brain and other parts of the nervous system, with around 100 cases reported worldwide. Harvey will most likely never walk or talk and will have severe developmental delays. It is a terminal illness and most children do not survive past early childhood. There is no cure for the disease, however treatments can assist with her quality of life and make her more comfortable. 

Bec spent over 9 weeks in hospital with Harvey and away from Tim and Texas. Now back home under Palliative Care,  both Tim and Bec have put their life on hold to care for Harvey.
Since Harvey’s first diagnosis she has deteriorated further losing most of her muscle tone. She cannot hold up her head, nor can she control her limb movements. Harvey requires a feeding tube, suction, multiple medications and special care 24/7.

Harvey has a very severe case of the disease and is in constant neurological pain. This causes her to be extremely irritable and have poor sleeping, making the whole family stressed and exhaustedtrying to care for her.

Bec and Tim’s focus is making Harvey comfortable and ensuring she has the best quality of life for as long as she is here. They are also committed to ensuring Texas feels supported and loved during this time, trying to keep his world as normal as possible. Their aim is to get Harvey to a stable and comfortable position so they can start to do fun things as a family and make happy memories. 

How can we help?
With the future uncertain and Harvey requiring so much care, Tim has been unable to work for 4 months. This has put the family under considerable financial strain and we would like to assist relieve this burden.
I am starting this page hoping that we can support the Carters to be able to focus on caring for Harvey and Tex, and assist them in being able to spend time together as a family. 

Thank you for generosity.