On Thursday January 31, 2002 the BBC (British Broadcasting Company) aired "The Costello Family - Gorlin Syndrome".
This was one segment in a five part documentary series, titled "Bitter Inheritance", focusing on genetic disorders. The BCCNS Life Support Network welcomed Jim & Margaret Costello, along with their son Richard, and the BBC crew as honored guests at our annual meeting in April 2001.
What follows is some of the email feedback that Jim & Margaret received immediately following the broadcast. They wanted to share it with as many people as possible. We are forever grateful to them for all they have done to promote awareness of the syndrome that we all share.
Well, its12.25 am 1st February here in the UK and it's been on!!!!! The film that is.
It felt really strange watching and thinking that many people will be watching. How will they react? The 'proof is in the pudding' , so they say. In the first hour since broadcast we have received in excess of 70 messages via the web page. It's just incredible, and guess what? I saw you all on the tele!!!! It was good to see you all again!
The messages we have received are amazing - so much support from people. Most expressing gratitude for Jim's courage in sharing his experience with the nation. Just wish you could have been here to see it.
Thank you Bill for your phone call this evening it was wonderful hearing from you and knowing that you were thinking of us.
As always our very best wishes, love and HUGS to you all.
Missing You
Margaret, Jim, Jane, Helen and Richard.
Hi
Jim and I thought it would be appropriate to share some of the many messages received following the TV programme. In view of the number of mailings received it is impossible for us to let you have sight of them all but I will send you a few (here is the first). Many of them extend best wishes not only to Jim, but to fellow sufferers. It re-affirms to me that there are some wonderful people out there.
Feel free to share some of the comments with members of your group, if you feel this is appropriate.
Margaret and Jim
Hello,
My girlfriend and I have just watched the BBC TV Programme about Jim's battle against Gorlin's Syndrome. This is something neither of us had heard of before and we were moved by Jim's bravery in coping with the disease, as well as those who are also affected by the problem. We live a stone's throw from Christie's hospital and it's easy to forget how different people's lives are just a few steps away, it certainly make you put life into perspective.
We hope Jim and all of the other sufferers of this terrible disease continue to find the strength to cope with it's affects and admire the courage and perseverance they show to highlight to the ignorant majority that more financial backing is required to give our children the chance in life they deserve.
Our thoughts and admiration go out to those affected.
Paul & Louise
Dear Sir/Madame,
I was deeply moved by the programme shown on the BBC this evening. I would like to say what a lovely person Jim Costello is, to have suffered for so many years and not become bitter and resentful is a credit to him.I was sad to learn that Jim had lost his sight. I would like to wish him and all fellow sufferers of this tragic illness, well for the future.
Yours deeply moved, S.Wojtowycz.
Having just watched your programme, i just felt a need to express my admiration for Jim, and his family, and indeed any other sufferers of this cruel disease....you are an inspiration to mankind, to see such fight and a will to carry on in the face of such adversity, i'm really so glad that advances are being made in treatments to help future sufferers.
Roi
This is a message for Jim Costello. I just your programme on BBC2 and I wanted to say that you blew me away. To deal with your disorder with such courage and dignity really inspired me. You are one brave guy. I reckon your family must be pretty amazing to.
I was worried about finishing my degree and getting a job, etc. etc. but I'm not so scared now. Thanks for giving me a kick up the backside!
I'm sorry to hear about you losing your sight. Be brave and don't let it beat you.
God bless you and your family.
Chris Hodges
Dear Mr. Costello/the Support Group
I watched the incredibly interesting programme on Gorlin Syndrome last night. I had previously never heard of this dreadful illness and had never imagined the kind of suffering people with something like this must have to endure. The emphasis placed by our society on physical appearance must make this illness a nightmare for sufferers.
I have never seen a braver man than Mr. Costello or braver people than the group which met in Cleveland.
I will read more about this on your site.
Good luck.
Lydia Chaumont.
Hello,
I'd like to send good wishes to Jim and to thank him very much for sharing the effects of his condition with us. I had not heard of Gorlin Syndrome and I have great admiration for his courage in showing how it can affect facial appearance. I hope I would never judge anyone by the way they look - I don't think it's in me to do so and I find it very sad that the emphasis these days is on how you look, not who you are. The person within is the important thing. Programs such as this one are so good to help us all realise the difficulties people experience and, hopefully, promote a better understanding of them.
Best wishes to you all and to your families,
Nicky
PLEASE READ THIS - I struggled reading it to Jim, eventually got there and I would like to share it with you all.
----- Original Message -----
To: gorlin-group@blueyonder.co.uk
Sent: Saturday, February 02, 2002 2:03 PM
Subject: "Can I have your autograph please?"
Dear Jim,
Even though I knew about your 'battle' with Gorlin's (having met you and your family), I was still deeply moved by Thursday evening's "Bitter inheritance" programme (which I've followed every week since it began). I had a lump in my throat when you were apologising to the viewers for the way you looked, minus your, now famous, baseball cap and shades. From where I am 'sitting,' you have absolutely NOTHING to be apologetic about.
As the programme continued, that 'lump' got bigger and bigger - your dear Mum, bless her, and the sadness she still feels for you (and the son she 'once' had), your daughter, who's fought her own 'battle,' and the resilience and strength of your wife. However, the greatest strength and perseverance comes from within you, dear Jim - and boy, what a character too. It takes great courage, I think, to 'fight' your own condition whilst 'fighting' to get this rare condition recognised nationally and bring it into the public arena, so to speak - not to mention forming the support group 'we' now have today. Thank-you Jim for ALL that you have achieved - if anyone should have a programme dedicated to one person and his/her battle with 'illness', it is YOU!! Well done that man, I say.
They say: "Never judge a book by it's cover" - likewise Jim, the same can be said of you, if I may be so bold as to use this analogy. When I think of the 'Jim' I saw for the first time, and the 'Jim' I got to know during those few annual meetings I attended, then, another quote comes to mind:
"Special people overlook your broken gate and admire the flowers in your garden" - another analogy here - but what I am trying to say is that when I look at Jim, the person, I look beyond the broken gate ('frame'), because there is so much to admire within the garden (within Jim, the person), and I am SURE that many, many more people out there feel exactly the same way, and see that same 'garden' that I do.
God bless you Jim... Regards to you and your family, from Yvette Davison & family.x
Dear Jim ,
I have just finished watching the BBC program regarding Gorlin`s syndrome and was moved to email you . I`m a 31 year old doctor , working with HIV patients in the London area . In some ways there are similarities in that in both cases there is no cure , they are chronic conditions , and can have a major impact on both peoples health and social lives . I would hope that these days doctors are more holistic in their relations with patients , not just treating illnesses but also trying to minimize their impact on peoples lives .
But let me come down off my doctors podium and speak as a human being . I lost one of my brothers 5 years ago , and like many people , began to question why life deals out such blows . It made me , more than ever before , resolve to try to make others suffering a little less if I could. Don`t get me wrong : like everyone else , I`m no saint. Sometimes you begin to wonder if anything you do really makes any difference . But perhaps its one thank you from a previously withdrawn or angry patient , one smile on someones face that keeps you going . Sometimes its the courage in another human being that awes you and makes your own problems seem so small. And I was awed tonight .
Your courage and determination is an absolute inspiration.What you have done in forming the support group cannot now be undone , and will continue to be a force for good as it ever expands. Many would be envious of such a lasting legacy.
What can I say further Jim , you , your family and all those with Gorlin`s or other chronic illnesses are the true heroes.
Best wishes for the future ,
Dr Gerry Gorman.
Well Jim,
I am guessing this email will be one of many many from people who watched telly last night.
I was just doing a little work on the net and I remembered you sitting under your stairs like a very up to-date mouse and I felt I should write a quick thank you note.
Looking back on the program Jim you managed to give me a body swerve, I did not once feel sorry for you or. indeed look upon you with any pity, you made those feelings totaly redundant because you came across as a bigger man than I have had the good fortune to meet in a long long time.
Jim for one reason or another I have been feeling a wee bit sorry for myself lately I didn't realise quite how much till you popped up on me telly and made me feel very very humble.
Your quiet dignity and generosity of spirit shone out of you like a beacon, it is obvious that you have a gift to inspire love and respect from those you share you life whether it be in a big way or small.
I like you Jim am lucky to have a good wife to support me and offer a loving kick up the behind (I cleaned that up) now and then, I can imagine between you, there are few challenges that walk away unscathed from a good fight.
Anyway I got out of bed today with me shoulders pulled back and me chest thrust out a little more than normal.
So as you can see I have you to blame for me walking about looking like Max Wall today.
Jim it is obvious you and you family have some tough roads to walk in the future, I will say this to you, and I feel because of your geographical history it may have some resonance, "you will never walk alone" I am sure I am not the only one to be moved and inspired by you and your lovely family and therefore you will be in my thoughts and prayers along with many others.
(By the way I don't pray often, so don't expect too many forwarded emails from the big fella, I go for quality rather than quantity,)
So that's it just a few words of thanks I hope you don't mind me sending.
Jim I wish you and your loving wife and daughters and son all that you would wish for yourselfes.
Cheers Jack Dempsey.