Real Stories – Leah and Chelsea

Back to blog2 years ago by Jodie
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Girl in wheelchair holding book facing camera
 
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‘Chelsea and her twin sister Ebony were welcomed into this world 8 weeks early on the 2 April 2001, after a very straight-forward pregnancy and birth, spending the first 5 weeks of life in the neonatal intensive care unit at the Canberra hospital where they received oxygen and tube feeding.

My husband Darren and I were feeling truly blessed (and we still are) to be bringing home 2 healthy babies to join their 4 brothers and sister.

It wasn’t long after settling in at home that I started to notice Chelsea’s development was different from that of my 5 other children.

It was at this point that our community nurse suggested we involve a speech therapist to help Chelsea with her inability to suck and swallow.

So at the tender age of 5 weeks old we began therapy, first speech therapy, shortly followed by physiotherapy then occupational therapy.

Over the next few months as we watched Ebony progress as a baby should, we sat back and watched Chelsea slip further and further behind.

I remember so clearly the day we were given Chelsea’s diagnosis at 5 months of age, I attended a routine paediatricians appointment with 6 kids in tow alone (Darren was working) to be told, “Leah you do realise Chelsea has cerebral palsy?,” – the rest of the appointment remains blank.

That evening we gathered as a family and broke the news to our parents, we all cried only once and grieved for the unknown. Many questions were asked all of which we were unable to answer.

What we did decided that evening was that no matter what happened in the future, we were going to make sure Chelsea had a great life and was able to experience as much as her siblings and reach her full potential, whatever that may be.

It was at Chelsea’s next specialist appointment that we learnt more. Chelsea had had multiple brain bleeds and was diagnosed with spastic quadriplegia cerebral palsy, which means Chelsea has very stiff muscle tone and all four limbs were affected. In summary this meant that Chelsea would most likely be confined to a wheelchair.

We have tried very hard not to focus on Chelsea’s disability but rather on her ability, Chelsea was unable to speak until she was 4 and even then her speech was breath controlled and came in short spurts, but trust me she has always been able to get her point across. Chelsea had a tube inserted into her tummy at 12 months of age to help with her feeding difficulties and I am proud to report that it was surgically removed about 18 months ago.

The next 13 years have brought us many highs and some lows, as well as 100’s of therapy appointments, countless equipment trials numerous medical and surgical appointments and various other interventions, all of which come at a great cost both physical, emotionally and financially.

We are extremely lucky to have such an amazing support network of friends and family as well as the invaluable assistance that Cerebral Palsy Alliance ACT provides. Chelsea’s equipment alone tops $100,000 which without Clubs ACT’s generous donations we would never be able to provide for our daughter.

Chelsea has developed into a bright, bubbl,y beautiful, opinionated and smiley young lady; she enjoys reading, story writing and riding horses at Pegasus Riding for the Disabled and especially enjoys the feeling of independence they give her. She has too many medical conditions to mention and is often in pain but very rarely complains. Being confined to a wheelchair gives Chelsea a lot of time to sit and observe which has given her many life skills and time to dream and imagine.

Chelsea has had to deal with so many things during her short life including frequent illness and hospitalisations. Chelsea has had 60 days off school this year alone as well as recently undergoing her 26th surgery.

It was for these reasons that during Chelsea’s kindy year she was granted a tutor through the Ronald McDonald learning program which introduced us to a remarkable lady, Rosemary. As Chelsea’s is unable to write and gets tired easily Rosemary scribes for her, but we hope in the future sophisticated voice activated technology will be of use and Chelsea will be set free to share her creative imagination independently.

Over the past 7 years Chelsea has written 9 children’s books and 2 chapter books. In year 5 she began reading her stories to the younger grades during lunch time, which quickly became a great hit. For as long as we can remember Chelsea has dreamt of becoming an author. A teacher from school recognised Chelsea’s unique talent and along with a great friend of mine from school, Linda, they approached a publisher, Harbour Publishing House in Ulladulla to gauge their opinion.

The feedback was extremely overwhelming and 100% positive; they loved her creative mind. So it is with enormous pride and gratitude that I can share with you, Chelsea’s first book ‘Á Hippopotamus in the Sink’ was published and launched and is now for sale through http://www.harbourpublishing.com.au/products/books/hippopotamus-in-sink and Dymocks Tuggeranong and Canberra City.

From my family and on behalf of Chelsea, we would like to sincerely thank ClubsACT and the Burns Club for supporting Cerebral Palsy Alliance ACT. Your incredibly generous support is changing lives.’

Leah