Team Violet has had a very busy 2022 with organising events, fundraising and awarding grants to children that need and deserve our help.
Local businesses & individuals have proved that once again our community can help us make a difference and achieve our goals. People giving their time, goods, donations or money is the only reason that we can continue to help children like Violet, Tahys, Manon, Diego, Octave, Lewis and Gabin.
Here are their stories……
Tahys has biliary atresia. He received a liver transplant in January 2020. He feeds mainly on bottles with specialised milk (unfunded), day and night at the cost of €400 per month. His parents have 2 small incomes. When Tahys is in hospital, his parents only eat one meal a day because it is too expensive (Paris).
Tahys has Liver surgery booked in Paris at the end of November 2022 and the funds will be to help his parents to stay close by and to be able to afford to eat more than once a day, hopefully relieving some of their daily stresses.
When Manon was 3, she had an open heart operation for a cardiomyopathy. Manon suffers from a poly malformation syndrome, cardiomyopathy, and growth retardation. Genetic research is ongoing in the United States. So far this is the only case in the world.
Manon also suffers from eczema. Her parents wanted to repeat the 3week treatment that she had in 2021 because it had was very beneficial in helping her damaged skin. Manon’s treatment is covered by their health cover, but the parent’s accommodation is not. We are hoping that the €500 we have awarded them, will help them get Manon the treatment she needs and deserves as soon as possible.
Diego has a rare genetic disease, (glutaric aciduria), although it can be managed with medication and diet, there is no cure.
Diego goes to Spain twice a year for 15 days to follow intensive physio.
There is no support for travel or accommodation, and at the cost of €3000 per trip, it is extremely stressful for his parents as they constantly think about how to raise the money they need for their son.
We hope by giving €1000 towards his care, it takes some of the strain of off his parents.
Octave has a very unique and disabling disease, without name or treatment. Since birth, he does not speak, eat alone, or walk.
Due to intensive rehabilitation sessions in Spain, this summer Octave took his first ever steps. It was just 3, but for everyone who knows Octave, it was a very emotional moment.
To continue and to improve his mobility, Octave needs to continue his treatment twice a year, in Spain. This costs €3000 per trip.
We are hopeful that our contribution of €1000 towards his trip will make a difference.
Lewis was born prematurely at 6 months gestation and he had a cerebral stroke shortly after birth. This resulted in muscle hypertonia which needs medication and continuous, sometimes intensive, physiotherapy to improve his Motor-Skills and to enable him to move more freely.
Lewis has yearly trips to Poland for intensive physio and monthly trips to specialists in France.
His parents are currently fundraising for a 15day trip to the USA for specialised physiotherapy and adaptions to his orthotics. We hope the €1000 we have donated helps towards the €13,000 that is needed.
Gabin was born 3 months early at 28 weeks. Like Violet, he has Cerebral Palsy with spasticity. Gabin moves around in a wheelchair.
Gabin is due to have an operation at the end of 2022 and is expected to have a long stay in hospital.
His Parents are raising funds so they can rent a property close to the hospital to enable one parent to stay continually and the other to join them at the weekends with Gabin’s little sister. We hope our donation will fund a proportion of the rental and help Gabin have his family with him while he recovers.
A special THANK YOU to all our dedicated supporters
….with a SPECIAL mention to Clive & Julie at Bar de la Poste for taking us under their wing and who have helped us raise €1500 during 2022
…. And a SPECIAL thanks to Dave at LPV Technology who, when given a very short, last minute deadline, saved the day and saved us from a media disaster!
…. And an individual THANK YOU to a 12 year old young man, called Zander, who held a little ‘vide maison’ and raised €45 for the children