Shortly after her birth in November 2010, Claire was diagnosed with a rare genetic disorder called Cri du Chat Syndrome. The condition is characterized by a high-pitched, cat-like cry due to malformations of the larynx, which is how the syndrome was given its name. ‘Cri du chat’ is French for ‘cry of the cat’. With an estimated incidence of 1:50000, CDCS is relatively unknown. By raising awareness of CDCS and by connecting with other Australian families, we have been able to learn so much more about Claire’s condition and to provide for her specific needs.
Development of speech has been particularly challenging for Claire. She continues to attend regular speech therapy and will most likely need to do so for the rest of her life. She uses sign language to communicate some basic needs, and in the last year has found her voice, approximating some sounds and words, much to our delight! The use of pictures, symbols and communication devices also support Claire’s efforts to communicate. The frustration she experiences when she is unable to get her message across is heartbreaking for us to see.
Claire is also very keen to get up onto her feet and to be able to walk. The use of her walking frame, regular physiotherapy, and attendance at swimming and gymnastics classes that are modified to suit her needs are just some of the expenses involved in helping this to become a reality.
We joined Sunshine Butterflies to support the unprecedented cost of raising a child with a disability that very quickly put much financial strain on our family. With your help, we have been able to
• offer Claire a comprehensive early intervention program inclusive of speech therapy, physiotherapy, occupational therapy, hydrotherapy, Conductive Education, music therapy, swimming and gymnastics;
• purchase equipment and resources to support her development;
• fund the continued expense of printing and laminating PECS symbols and picture cards;
• connect with other families affected by CDCS through our attendance at national events;
• arrange some respite to allow Callum to have some individualised attention, and to give ourselves time to connect as a couple and family; and to
• subsidise the costs of travel (hospital parking, fuel, etc.) and medical expenses (medicines, hospitalisations).
Your continued support assists us in providing her with the specialised therapies, equipment and individualised attention that Claire needs and deserves, and we thank you for helping us to give our gorgeous girl such an amazing start to life.
Thank you for helping us to give Claire the amazing start that she deserves. We hope you might continue to follow her progress at www.clairematilda.wordpress.com, or at like our Facebook page, www.facebook.com/clairematilda.
Hannah, Matt and Callum x.