• Flo versus disease
    Save Florian

    My name is Florian, I am 2 years old and suffer from Wiskott-Aldrich syndrome.
    Without treatment, my life expectancy is only 3 years.
    To stay alive, I need a bone marrow transplant.

    Flo’s biography How can I help ? Contacts

    Aujourd'hui, l'association fonctionne essentiellement avec l'argent de la famille de Florian, mais pour continuer d'exister,de se développer et pour aider la recherche l’association à besoin de plus de moyen. Merci pour votre aide.

Flo’s biography

florian

Florian Flo is two years and a half and has already been taken six times to the hospital, spending in total over 1OO days in different departments.

He received 20 transfusions of blood platelets and 3 cryopreserved red blood cells ones. He’s been punctured 2 times during myelogram examinations, had so many blood tests doctors decided to place a port to make them easier, he got MRI, heart ultrasound scans, funduscopic exams, a colonoscopy… actually he’s the one who tells interns in the hospital what to do with him…

In order for this situation to stop, he needs you!

Wiskott Aldrich

Florian suffers from a genetic disease called Wiskott-Aldrich. Genetic disease is caused by abnormalities in the genome, in every single cell in the body. The results of these abnormal genes in Florian’s body are observed in the bone marrow whose job is to make blood cells.

Normally, throughout our life, the bone marrow which is present in certain bones contains special cells called stem cells which grow and turn into red blood cells (which carry oxygen), into white cells (which fight infections) and into platelets (whose function is to stop bleeding).

In Florian’s case, these transformations are not carried out properly and consequently his blood doesn’t have enough of those cells.

The lack of red blood cells (erythrocytes) results in anaemia, the lack of white cells, especially lymphocytes, causes infections and other immune disorders, often accompanied with eczema and itching. And the lack of platelets is the cause of bleeding of varying importance, sometimes minimal such as small red stains on the skin (petechiae) or mere bruises as well as potentially very dangerous like internal hemorrhage.

Therefore, the risk of serious infectious or bleeding complications is high and represents a real threat to Florian’s life, despite his temporary current treatment based on transfusions, antibiotics, and growth factor injections (which stimulates stem cells). Gene therapy being not developped enough yet, the only real hope of succesful treatment is bone marrow transplant.

How can we save Florian?

1.
I contact the local blood collector of my country
2.
I wait for the closest center to contact me
I go to a medical interview where a sample of my blood is taken.
3.
If my application is selected, my name enters on the bone marrow donor list and I get my card.
4.
I can be contacted anytime

Donating bone marrow is saving a life !!!

Requirements :

    to be healthy ;
    to be between the ages of 18 and 51 at the time of registration
    (even though you can donate until 60 afterwards);
    to accept to answer a health questionnaire and have a blood test.

Compatibility :

In order to determine it, doctors conduct biological examinations from a blood sample and perform HLA typing. This typing is used to know the characteristics of a bone marrow to compare it with the ones of people who need a transplant.

How are bone marrow donations performed?:

1. Collection by epheresis

The donor receives for a few days subcutaneous medicament injections, which is the same as what is naturally created by the body to regulate the bone marrow cells number. It stimulates its production and leads them from the bones to the blood where they will be recovered. One or two collections (of 4 hours in length) are necessary.
Using this method, we can collect a large quantity of hematopoietic stem cells.

2. Collection by puncture from the pelvic bone

This simple surgical act requires the donor to remain in the hospital for 48 hours. It’s performed in an operating room under general anaesthesia and doesn’t carry any risk of paralysis. The quantity drawn out depends on the weights of the donor and the recipient. This technique allows to collect hematopoietic stem cells and their surrounding environment.

The transplant physician is reponsible for deciding which collection method is the most appropriate for the recipient ; therefore the donor can not choose it.

About the donation

Mon dossier :
Your record is stored in your national registre of bone marrow donor, directed by the Agency of biomedicine under the Ministry of Health’s supervision. France Greffe de Moelle is a member of World Marrow Donor Association (WMDA) which gather 79 international registries, listing over 24 million donors in 60 countries. It was the first registry accepted for accreditation in 2004 and once again in 2009

Tout savoir sur le don

Businesses and associations partners of FloVsMaladie

Name
Logo
Internet Site
Action
Partnership
Dieup’Art
All Communication
L’imprimerie Monterrain
Prints us everything !!!
La dré dans l’Darbon
An information stand
Mont Blanc Club Natation
An information stand
Marcelly Aventure
An information stand + t-shirt , Key holder and candies + donations
l’UTMB
An information stand + t-shirt , Key holder and candies + donations
le vélo club Mont Blanc
An information stand + t-shirt , Key holder and candies + donations
Super U Passy
An information stand + All personel wearing the assosiation t-shirt + t-shirt sale and key holder + donations
Trail du tour des Fiz
An information stand + Organized a race for Florian (1€ donated to FloVsMaladie per participant)
Graphicpub Vallauris
Streamer + actions for Flo