They left this world ……
We have just heard, with great grief, about Abdulaziz’s passing.
Born in Yemen, he was able to emigrate to Canada with all his family.
He was 11.
May he Rest in Peace.
New Patients, News from Families
Aaxel, Javiel, Lylio, Yamani, Ovinga, Mina, Gisely, Thomaz and Alice have recently joined us.
We are now in contact with 540 patients and families. Their isolation and loneliness facing Cutis Laxa has disappeared.
Welcome to all of you.
We are glad you joined the Big Cutis Laxa Family.
THEY LEFT THIS WORLD
It is with deep sorrow that we learned that Chiara, in Italy, and Dave, in UK, passed away.
For both of them, lung issues due to Cutis Laxa got the better of their energy and will to fight. Chiara was supposed to attend the Days in Ghent and Dave had attended the Days in Annecy. We send their families our thoughts and condolences, as well as lots of courage to face this hard time.
NEW MEMBERS
Mc Kenna Rose, Magali, Ezra, Hudson, Amelia, Maui Rose, Julie, Lennox, Aaxel, Eric and Harlyn joined us since the biginning of the year. A new country was added : Dominican Republic
There are now 533 patients gathered together and allowed to share their distress, their questions, but also their challeneges and successes living with Cutis Laxa. We are here to help them.
Good-Bye ERIC
I am so very sad to announce that Eric MOLINIE left this world on 21st December 2022.
Eric was former chair of AFM-Téléthon in France. He was himself diagnosed with Duchenne Myopathy.
He is the one who made it possible for Cutis Laxa to be known and research be done.
We had explained to Eric that without enough known patients research would never be done on such a rare disorder. He had promised that if we knew at least 10 patients, AFM-Généthon would start a research.
In december 2001, Cécile took part in the French Téléthon for the second time. At that time, we knew of 9 patients in France and abroad. Cutis Laxa International was just 1 month old, being set up on 11th November 2001.
We were on stage, live, explaining that 10 patients were needed, at least, to start a research, when Eric quickly rolled his wheelchair to join us, saying that a 10th patient had called the AFM and that, keeping his promise, Genethon will start a research project.
And on February 2002, it started.
We were all crying on stage. And still today, 20 years later, this memory brings me tears and shivers.
Thank you Eric, Without you the 520 patients we know of today would not have research going on giving them hope for the future.
Thank you Eric, for staying faithfully at our side during all these years.
Rest In Peace dear Friend
New Patients
Cutis Laxa Internationale now gathers 517 patients coming from all parts of the world:
Stacy, Amber, Ayse, Celia, Deacon, Emmy, Scott, Anna, Em, Amelie, Patricia, Yousef, Nora Grace, Warisha and Nicole joined us since our last newsletter.
Our Big Cutis Laxa Family is glad to welcome them and give them all the help and support they need.
Very sadly I need to let you know that two of our members passed away : Anaaya, 3 ½ , in India and Dominique, 51, in France. Again, we send our deepest condolences to their families. May they Rest in Peace.
GOOD-BYE
Time to go home….. It is so hard to leave each other.
Longing to meet again ……. Roll on the 7th Days …
NEW CONTACTS, NEW FAMILIES
Cutis Laxa Internationale now gathers 501 patients coming from all parts of the world:
Kim, Amina, Nura Bay, Linda, Dawson, Riley, Cecelia, Rai, Sutton, Bodhi, Katia, Heather, Inter, Melany and her daughter Lilian, Husseini, Xenia as well as Samardashi, Arthur, Stacy, Amber and Ole joined us lately.
Our Big Cutis Laxa Family is glad to welcome them and give them all the help and support they need.
Our « Big Cutis Laxa Family » grows day after day.
Its new members : Joanna, Ayse and her two brothers, Delphine, Elizabeth, Adar, Aakshay, Fabricio, Solange, Andrea, Zahid, Dilsa, Jannae & Julia, Fatiha and her sister, MaryAnn come from Poland, Turkey, Canada, Saoudy Arabia , USA, Israel, Brazil, Italy, Colombia, France.
All around the world, 479 patients are now part of our Cutis Laxa patients’ community.
On 27th May I heard with deep sorrow about Maddie’s passing. She was 19 months old. I had talked a lot with her mother during her long stay in hospital. Rest in peace sweet angel, your pain has disappeared.