Vaudreuil-Dorion family launches fundraiser to buy an adapted van for disabled daughter
PHOTO BY LAUREN MITCHELL
Vaudreuil-Dorion residents Eric Cugurs and Esmirna Lopez are looking to raise $25,000 to purchase a specialized van to transport their disabled daughter Amanda.
March is the month where we bring awareness to the chromosomal disorder named Trisomy, in which a person develops a third chromosome instead of only having two and a local family is rallying to raise funds to transport their affected daughter.
“Amanda doesn’t walk or talk, and yet, she is a very happy girl,” said the parents of Amanda, Esmirna Lopez and Eric Cugurs. “For being happy, her needs are simple; to be paid attention to such as a massage, a good scratch, being spoiled by being carried or held, and her favorite toy is a colorful helium filled balloon to play with. She has taught us to enjoy simple things in life. Some people have almost everything, yet are not always happy.”
There are six different types of Trisomy disorders related to humans, the most commonly known being Trisomy 21, also known as Down syndrome. The second most common that affects primarily females is Trisomy 18, also known as Edward’s syndrome. Edward’s syndrome is having a third 18th chromosome, which is a result of nondisjunction during meiosis. Having the extra chromosome causes internal organ disorders, which is the reason why most die before birth.
Studies have shown that 3 per cent of cases result in a live birth, and of that three percent, half of those infants born do not live beyond the first week. The average lifespan of a child with Edward’s disease is between five to fifteen days, and only about eight per cent of infants make it to their first birthday. Amanda, who has this disease, is a special case as she has beat the odds as she will be celebrating her eighth birthday later on this year.
Amanda has the common full Trisomy, which means she has that one extra chromosome in every cell. This means that she suffers many different physical problems. She has a large VSD (ventricular septal defect), and pulmonary hypertension, pronounced scoliosis, and is considered legally blind. She is fed through a gastro-tube with a pump, and therefore needs her parents around her all of the time.
Despite all of these difficult conditions she is experiencing, Amanda has grown to still be able to be happy. Amanda’s parents face more difficulties as she grows older, as she has now outgrown her car seat used to transport her from her home to the vehicle. The family is hoping to get a new adapted van, in order to fi t the new custom made stroller.
“Well safety-wise, she’s seven years old and we still transport her in a baby car seat that she has grown out of,” said her parents. “It is affecting her scoliosis since she is not traveling in a proper position. We have special equipment that travels with her, a custom made stroller that can be attached to an adapted van, we have to carry her with an oxygen concentrator and we also have to bring her pump for feeding, a baby bag with supplies, diapers, food, clothes as any baby will need. It has become a very challenging situation to carry her from the house to her van with the concentrator at the same time because she has grown a lot.”
The couple receives government subsidies, and the mother keeps a job 24 hours a week. The father is retired, staying home to care for Amanda. The new adapted van that they need to get costs $25,000. They have set up a fundraising page on gofundme.com, in hopes that people will be able to help them reach their goal.
“We have learned from her strength, to be patient, we have learned to appreciate the gift of life. We do not brand her as a child that is a burden, having Trisomy 18 and all the other symptoms that go along with that condition. To us she is just our Amanda, a perfect little girl that makes us happy and that we will do anything needed to be done in order to keep her happy and as healthy as possible.”
To donate to the fundraising campaign, please visit www.gofundme.com/nto2o0.