Sunday, 9 November 2014

Wheels for Evie

In past blog posts, I have mentioned that Evelyne uses a specialised pram for school and outings. She has joint pain issues, spinal pain, low muscle tone, fatigue and reduced lung capacity due to her scoliosis. In summer months, she becomes quite exhausted from the heat due to the brace. Her school use the pram towards the end of the day, or when they have to go further distances within the school, such as the oval or the library. We use it on holidays, for hospital visits and at the shops. It has been an great help to both reduce her pain and fatigue, and save our backs from carrying her as she gets older.

Recently at school she has been teased about being in a pram, "only babies go in a pram". This is understandable as a pram is inappropriate at her age. As a result we have come to the realisation she will need a wheelchair. This was particularly apparent at her recent sports carnival. Her teacher was kind enough to race with her around the oval, but it was very obvious she had difficulty participating in many of the activities, even though she tried so hard to be involved.

The first wheelchair trial was confronting. She at first refused to get in it, she said it was too 'scary'. Once she agreed to try it, I also got quite emotional seeing her in the chair. It felt like such a big transition. While she was young, we could hide her disability in the pram. Now  it is more obvious. After an hour of trialling the wheelchair, she realised using it gave her independence. This was by far the biggest impact. She loved that she could get around herself, without someone else having to push her.

The hospital lent us a chair to trial which gave us the opportunity to see if it would be appropriate for school and home. After a successful trial, we have now started fundraising to purchase her own chair. In Australia we can apply for funding through the government, however, as she can walk, she is seen as a low priority category. This means we could be waiting approximately 2 years for the chair. 

Some of my mum's gorgeous clothes
My mum made a huge amount of clothes to sell, and various people donated clothes for a facebook sale site. On top of this, we have been blown away with the generosity of people within our church, school, family and local community, as well as some people we have never met.



Wheels for Evie facebook site

Handmade girls clothes

Girls auction

Boys auction

Donation site


4 comments:

  1. Hi, my name is Tracie and I am a pediatric nurse practitioner student at the University of Oklahoma Health Science Center -location: heartland of the USA :). One of my final assignments is to create an anticipatory guideline handout over a chronic condition. I chose Beals syndrome! I have been searching for pictures to add to the handout and have been having a difficult time finding pictures that weren't scary until I stumbled across your blog. I wanted to ask your permission to use some pics of Evie. May I please use a few for my handout? Thank you for sharing your family's story for others! ~Tracie

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  2. Loved reading about how beals has effected you and your daughter. My 2 year old daughter has beals as well and it's nice to hear stories of some one else having it and see the similarities.

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  3. Love to read how beals has effected you and your daughter. I have been searching for pictures to add to the handout and have been having a difficult time finding pictures that weren't scary until I stumbled across your blog.Thanks for sharing...

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