Thursday, 31 July 2014

Hope for Ollie and how we can help

How and why did Hope for Ollie begin

HopeforOllie began in 2010 after my son Oliver (Ollie) was diagnosed with Duchenne Muscular Dystrophy (DMD) at 10 weeks of age.

After Ollie’s diagnosis, I felt I needed to do something proactive to help find a cure for my son and other little boys like him. I saw a niche in the market for high quality and modern handmade children’s clothing and decided, with the help of Ollie’s grandmother’s, to sew and sell children’s clothing and accessories and donate the net proceeds to DMD research. I always enjoyed sewing and Ollie’s grandmothers are seamstresses so it seemed like a practical way to raise money.

Over $36,000 has been donated to DMD clinical trials carried out by The Institute of Neuroscience and Muscle Research (INMR) at The Children’s Hospital at Westmead.

HopeforOllie is officially endorsed by The Children's Hospital at Westmead to act as a fundraising agent on their behalf.

Can you explain in layman's terms what Duchenne Muscular Dystrophy is and the impact it has on not just those affected by it, but also the family, friends and overall life style

DMD causes all the muscles of the body to weaken and break down and affects approximately one boy in every 3,500 worldwide. DMD is severe enough to shorten life expectancy as it ultimately affects heart function and breathing. Average life expectancy is 25 to 30 years.

At the moment Ollie has reached many of his milestones and is managing to keep up with his pre-school peers. Ollie has a support person at pre-school to help him master the play equipment and participate in indoor activities to prevent fatigue. 

Having received a diagnosis at such a young age, I’m sure Ollie thinks that all boys wear night splints, do daily stretching exercises, take lots of vitamins, and have medical appointments every few months!

As a family, we have hope. Hope that one day a cure will be found or at least advances made in the quality of life of boys with DMD. At the present time, the only treatment that experts recommend to slow the decline in muscle strength and mobility is steroids.

You have chosen a creative outlet to channel your energies to not just promote awareness but raise much needed funds for research & development for DMD.  How far has this venture taken you to date both practically and more importantly emotionally

Since HopeforOllie began, I have come across so many wonderful and supportive people that genuinely want to do their bit to help. Local business support, fundraising events, donations of fabric and accessories, seamstress’ volunteering their time, photographers, the development of the website, and media attention (see below for the link to a recent TV grab) have all contributed to the success of HopeforOllie.

I am motivated to do whatever I can to find a cure for DMD. The continual positive feedback I receive keeps me going as does the pleasure of knowing that I am making a difference to the lives of all boys with DMD.

Where do you get your inspiration to sew these incredible pieces from, and more importantly, how involved in the selection process is Ollie himself

I let the fabric guide my designs rather than the designs guide my fabric choice. I trust my creative instinct when it comes to designing clothing and accessories. I follow this flow chart:

My clever and talented daughter Emily loves to sketch designs for HopeforOllie and is involved in the fabric selection process alongside Ollie. It is great to get their opinions!

I love being presented with ideas from friends, colleagues, parents and customers.

What can people do to help you on your journey

HopeforOllie’s main aim is to raise much needed funds for DMD clinical trials carried out by The Institute of Neuroscience and Muscle Research (INMR) at The Children’s Hospital at Westmead.

Raising awareness of DMD is crucial to finding a cure. You can support HopeforOllie by purchasing items online (click "here") , or in person at our soon to be launched shopfront in the Leichhardt Forum, and at various markets in the inner west (including Orange Grove, the Norton St Festa and the Five Dock Ferragosto). 

To keep up to date with the HopeforOllie journey, you can sign up to the newsletter on the website and follow us on Facebook (click "here")  and Twitter (click "here")


Now Ollie and his family were featured on TV, so click on the grab "here".  It's definitely worth the watch to help raise that all important awareness of this aggressive disease. Of course there is also another way we can show support!  Buy up some of Patricia's amazing creations at market (or online when she's not there), shake the hand of the little man known as Ollie and show the infamous support that Inner Westies are known for!  

Let's make difference!

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