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Claire Matilda Gutke – Toowoomba

Early Intervention

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.

Comments

  1. Sunshine Butterflies welcomes the Gutke Family and wishes you all the best in your endeavours to raise funds for Claires much needed early intervention requirements.
    Good luck.

  2. Kristy Thompson says:

    Hi Hannah, I have a son with Cri Du Chat. I contacted Sunshine Butterflies for some help myself. They gave me a link to your story. I was shocked because I often have to explain Cri du Chat. Leanne from Sunshine Butterflies said I have come across Cri Du Chat, I know about it. I nearly fell over. So here I am writing to you. I am a little excited I can now say I know of someone with Cri Du Chat. My son is four, he is going great. He is hard work though. I love him dearly. He lights up my day. I am now at a stage where I never mentioned to anyone my son has Cri du Chat, but now people are asking about him so I figure it is obvious. I am open now and most people are respectful. For a long time I didn’t visit my friends because he was such hard work but now I am up front and it has surprised me how accommodating people are to him and myself. How old is your little girl? Do you have any other children? Would you be interested in writing to me or meeting up with me to talk about Cri Du Chat? I have navigated on my own for a long time. I think I might be able to help you a little, we could share information together. I often visit the Gold Coast. I grew up there and all my family lives there. Anyway I will wait for your reply. Feel free to contact me via sunshinebutterflies.
    Thanks for your story.

    yours sincerely,
    Kristy Thompson

  3. Hannah says:

    Hi Kristy,

    It is great to hear from you. Thank you for your message of support. I have found meeting other families to be a positive experience. Hopefully we can meet up some time soon. I have sent you an email. :)

  4. Hello to the Gutke Family,

    I wanted to say that the fundraiser on Friday at Salt was a very enjoyable event!
    Everything from the food, entertainment and auction items were great!
    All your hard work Hannah definately shone through and I really appreciate being given the opportunity to not only support but celebrate Claire, who honestly is a beautiful little girl!
    All the girls from Special Needs Solutions, wish you the very best in your fundraising efforts and welcome you into our Special Needs Solutions family! :)

    If you ever need anything, we are only a phone call away!

    Much Love,
    Tiff, Maureen, Bridget & Hayley x

  5. [...] bits and pieces have now been packed and are ready to go for delivery this afternoon.  Thank you Hannah for letting IQ Accountants be involved in your wonderful efforts as you continue to work to raise [...]

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