The capacity of the human spirit to triumph over even the most challenging of circumstances is often extraordinary — and deeply moving.
People who are born with a rare disease or illness have more than their fair share of challenges to contend with.
Not alone must they cope with the restrictions and problems created by their condition, but they also live with the knowledge that, because of the uniqueness of their condition, funding for research will be limited.
This often means that any progress against what might seem to be insurmountable odds come as the result of individual effort and rugged determination.
Tetra-amelia syndrome — also known as Total Amelia — is one such potentially catastrophic disorder. It is caused by mutations to the WNT3 gene and is characterised by the absence of all four limbs.
The protein produced by the WNT3 gene is involved in the formation of the limbs and other systems during embryonic development.
The lack of WNT3 protein can also lead to other serious defects associated with the syndrome. Severe malformations of the face and head, nervous system and skeleton malformations can occur.
In some cases the lungs are underdeveloped.
Only seven people worldwide are known to have this condition. Despite the many daily obstacles facing them, several of these extraordinary people are living dynamic and inspirational lives.
Joanne O’Riordan, a stylish young woman from Millstreet, Co Cork, has featured in the news for her feisty confrontation with Taoiseach Enda Kenny for reneging on his promise not to cut disability assistance. Joanne has Total Amelia Syndrome.
She has appeared twice on the Late Late Show, to rapturous audience response, appeared at the United Nations in New York where she addressed the International Telecommunication Union’s “Girls in Technology”, conference, and is actively working with her brother Steven on the documentary No Limbs No Life.
Teenager Joanne has undergone spinal surgery recently, but neither this nor being refused funding by the Irish Film Board for the documentary, has put a dent in her confidence or her determination to get the job done.
I spoke with Joanne’s brother filmmaker Steven O’Riordan about their plans. Since the interview below Rehab Group has given €20,000 towards the cost of the film and an anonymous donor has provided €40,000.
* Steven, you got off to such a promising start with the project. Was it a shock to you both when the Film Board turned down your request for funds?
>>It was, particularly since they had given us a development grant, and they had initially seemed so positive. But we are not about to give up. We’ve already shot over 17 hours of film.
* What reasons did they give you?
>>They weren’t very specific. They simply said that it was their opinion that the project lacked “cinematic appeal”.
* Did you take that to mean the problem lay with your story line or with Joanne’s particular disability and the audience’s response to it?
>>It’s hard to know exactly what it was but we are, as they say, vigorously pursuing other options. We are determined that No limbs, No Limits is going to be made and out on general release by next year, and represented at all the film festivals.”
* What’s your background, Steven?
>>I trained at Bath University in the UK for three years and I got a degree in film and drama.
* And then you got involved with the Magdalene Laundries issue , I believe?
>>Yes and it was a fantastic experience, working with such extraordinary women who came forward to tell their story. The Forgotten Maggies helped bring it to the public and get financial redress for the women.
* What effect did this have on your decision to tell Joanne’s story?
>>Well, I figured that if I could get as far as I did with The Forgotten Maggies when, in the beginning, we had no money and no support, then I could surely tell Joanne’s story, which is extraordinary and inspirational. And it’s not just all about how much Joanne has had to overcome The story has a strong universal and inspirational appeal.
* How did Joanne respond to the Film Board’s decision?
>>She’s every bit as determined as I am to get the documentary made. And Joanne can be a very determined young woman when she has her mind made up. She just said, ‘Ok, let’s look at other ways of raising the money’. And that’s exactly what we are doing.”
* How much money do you still need?
>>We think about €80,000 would be needed to finish filming, and to take care of the editing and marketing side of things. Now it’s up to me to make sure the project is presented in the right way.
* What has the support been like?
>>Pretty incredible. The Cork Film Centre has offered the use of their studios and equipment, and many other people have offered their help. So we are very hopeful. Vodafone are interested in Joanne’s story too. She went up to Dublin recently to give a talk to them about how technology has transformed her life, and how she actually manages to utilise it.
* Why do you think Joanne has the personality and determination that she does.
>>Well for one thing, she was never put in a corner by the family. There are six of us and she was always included in everything we did. She is very articulate, funny and outgoing, a fashion-conscious teenager with interests just like any other girl of her age. No Limbs, No Limits sums up just what she’s all about She wants her story to be told. Joanne is my sister and I’m going to do whatever I can to get this film made.”
* Steven and Joanne can be contacted at firstname.lastname@example.org
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