Saba Rose Button Foundation - CDG Awareness

Our daughter, Kelsie Stewart, was diagnosed with Congenital Disorder of Glycosylation (CDG, subtype 1A) at the age of 13 months.

Kelsie is now 9 years old and many of her bodily functions remain significantly delayed. This means that Kelsie requires substantial modifications and assistance to partake in any activity. For example, Kelsie’s primary form of physical movement is crawling when she is not in her walker or wheelchair, and requires assistance to stand, walk and/or ‘run’. Kelsie requires adult assistance to engage in meaningful and sustaining two-way communications, including interactions with her friends. Kelsie is unable to complete all daily tasks independently including toileting, feeding and independent movements in her home and community.

As a result of Kelsie’s limitations in her abilities, a substantial amount of hands on supports and interventions is needed for her to be able to obtain a quality and inclusive life.

As Kelsie has grown, so too has her awareness of her disability and how she is different from other children. With her increased awareness, comes an increased body image awareness and a sadness in having a disability as she is limited in joining in amongst her friends as they all develop at normal rates.

The challenges associated with Kelsie’s condition have become more demanding and Kelsie continues to require significant interventions from a range of medical specialists. Kelsie is no longer considered in need of the equivalent levels of early intervention afforded to children under the age of 7 living with disabilities, despite being obviously delayed to be more in line with a six year old.

With reduced funding, increasing challenges, and a growing need for intensive hands-on support and interventions, we find ourselves in greater need than ever to raise awareness and funds for the Saba Rose Button Foundation, and for Kelsie.

To give context of the costs involved in our challenges of raising Kelsie:
- Kelsie's wheelchair: $14900
- Kelsie's walker: $7500
- Kelsie's Toilet Support: $6447
- Kelsie's Physio: $346 per hour (including travel)
- Kelsie's OT: $336 per hours (including travel)

The Saba Rose Button Foundation is a not-for-profit charity focussed on raising funds to help children who have special needs and their families. Their assistance in supporting families like our own includes funding critical therapies, equipment, and specialist knowledge to help children be included within their communities and have a quality of life. The Saba Rose Button Foundation have also launched their Regional RehabMe program, supporting Kimberley families like ours, to access the supports they require through a grant application process.

Throughout the month of May, we are campaigning to raise awareness and funds for the Saba Rose Button Foundation and our daughter Kelsie Stewart through the following events:

CDG Awareness Community Fundraiser
Venue: St Marys College - Primary School Campus
Time: 2-7.30pm
What to Expect: Craft and interactive activities for the kids (and adults), food, live entertainment, a community yoga session, and 'Wonka' the movie on the big screen.....

This is one not to be missed!

Cant make our event?

Then show your support by kindly donating to my campaign and you will be directly impacting children living with additional & unique needs to access therapy, support & specialised equipment.

Help us to make a MASSIVE difference!!!
Please share with family & friends.

Together, we can do this! Because INCLUSION MATTERS ✌️

Love Kelsie, Lee & Co. X X





Links:
https://bit.ly/SabaRoseButtonFoundation
https://bit.ly/CongenitalDisorderGlycosylation-CDG
https://bit.ly/KelsieStewart-CDGSuperhero