We have repeatedly been overwhelmed by the generosity of our friends, family and complete strangers as we have shared Claire’s story.
While I was pregnant, close friends chipped in to shout Matt and me a night out, with the offer of babysitting included. We had friends and family look after Callum while we attended appointments. Our families forfeited Christmas gifts to assist in covering Claire’s medical expenses. In our time staying at Ronald McDonald House, my sister made and delivered us meals. Our first three weeks home from hospital were made so much easier by the daily delivery of home-cooked treats from my work colleagues, many of whom were not at that time ‘in the loop’ with why this support was so valued by our family. After Claire’s first hospital stay in December, we again were supported with meals made by friends. To be honest, I never knew people liked us so much! Or, maybe they just think I’m a really bad cook. 😛
When my cousin, Jess, suggested that her group, Charity’s Angels Brisbane, would like to produce a recipe collection to raise money for Claire’s ongoing expenses, we were again totally overwhelmed. The enthusiasm with which family and friends approached the task of sharing their recipes was fantastic, and Mum and Dad did a great job of putting together the final product. The book sales again demonstrated how generous people really can be. It was wonderful to be able to share the success of this with the Cri du Chat Support Group of Australia with a donation of almost $2000.
We have created Claire’s Sunshine Butterflies individual fundraising page in response to family and friends suggestions that they would like to help. Donations through this link are tax deductible, and funds are only able to be accessed to directly pay invoices for Claire’s therapy, equipment and other related expenses.
Like any parent, we want the best for our children. We want Claire to have access to the best early intervention programs and equipment available and we believe that for her to have the best start to life, it is important for her to have access to her parents as well. This of course, all comes at a cost. It is frustrating that Government funded programs and support are so limited for Claire and other children with rare conditions or no specified diagnosis. It is exhausting enough trying to navigate a new world of having a child with a disability. Having to battle to access services and lobby against unjust government initiatives (such as the Better Start for Children with a Disability Initiative) makes life just so much more difficult and exhausting.
Still, we do what we can to provide Claire with the therapies and equipment that she needs. Currently, Claire attends physiotherapy, hydrotherapy, conductive education, speech therapy, and music therapy, and we hope to begin ABA therapy in the new year. Some provision is made through our private health insurance for these services, but we still estimate that we will be about $10000 out of pocket each year if we are to provide the early intervention programs that we feel will best prepare Claire for her future. Claire’s therapists have also suggested that orthotics, a standing frame, a special needs stroller, and a walker are pieces of equipment that she could benefit from in the next 18 months. This equipment totals in excess of $10000.
The most recent generosity that we have experienced has been from The Saltbar Beach Bar and Bistro, in Salt Village, Kingscliff. This group have offered to organise, host, and sponsor a fundraising lunch for Claire on a Friday in February and we have graciously accepted. Event details will be finalised within the fortnight, once guest speakers can be announced. What we do know, is that tickets will include a full seafood buffet and three hour drinks package, along with entertainment. We would absolutely LOVE to fill tables to capacity of 300 supporters.
If you are able to help with this event in any way or know of someone who may be able to help, please contact us at firstname.lastname@example.org or email the Raygroup Marketing Manager, Katrina Dudley. We are looking for financial sponsorship, donations of raffle and auction items, and advertising. We would also welcome assistance in approaching local businesses for support as the details become clearer. If you could PLEASE spread the word about this event and encourage people to purchase a table at the event or individual tickets we would be significantly grateful. We know that this is an amazing opportunity and we intend to give 200% to support the Saltbar in organising an event that will be one to remember.
We are so very proud that the gift of one little girl has already had such an impact on our lives and the lives of so many others. The fact that she incites so much generosity is only more proof that she is exactly who she was meant to be and sure, she may be tiny, but she’s already having such a big impact on the world! The thought that people want to help our precious Claire makes us so very grateful and we just feel so blessed to be her parents.
Thank you so much for your continued support.