Nation must assist people with disabilities

Little Shannen suffers from thalassemia major, a blood related disorder which requires a monthly blood transfusion. According to the Thalassemia Foundation of Canada’s website, thalassemia major occurs when a child inherits two mutated genes, one from each parent. Children born with thalassemia major usually develop symptoms of severe anaemia within the first year of life.

They lack the ability to produce normal, adult haemoglobin and experience chronic fatigue. They may also fail to thrive. Two major consequences of the disorder are severe anaemia and expansion of the bone marrow in the body’s effort to produce more red blood cells. This leads to poor growth, impaired physical activities, facial and other bone deformities, fragile bones and enlargement of the liver and spleen. In some cases, it can be fatal.

Speaking to Newsday yesterday, Michelle said she and her husband learnt their daughter had the disorder when she was nine-monthsold.

She said when they visited the paediatrician, Shannen was placed on a scale and the doctor noticed she had lost weight. He sent her a blood test and the diagnosis was later made. Since January 2014, Shannen has received a blood transfusion monthly at the Eric Williams Medical Sciences Complex (EWMSC) in Mt Hope.

The family began consultations with Dr Waveny Charles who in the past, sent children to Italy to have the same procedure done.

“She told us about the transplant and the family got tested but none one of us were a 100 percent match.

We were all half matches, but she told us about this new technology with half match transplants and there have been really good results. Dr Charles recommended the hospital and the doctor and we have been raising funds since last year,” the mother of two said. The procedure will be done at the Bambino Gesu Hospital in Rome, Italy on May 2. That procedure will cost €158,000 which is approximately TT$1.2 million. In addition to the transplant, the family will need to stay in Italy for seven months to ensure Shannen recovers fully.

The Luke family has since mortgaged their home and have held a fund-raising barbeque.

Last weekend they organised a calypso show in their neighbourhood in Brazil Village where several calypsonians including Eric “Pink Panther” Taylor, Devon Seale, Karene Ashe, Duane O’Connor and Sasha Moses all performed for free. The family has also planned a cruise on the Harbour Master this Sunday from 10 am to 2 pm.

The Rotary Club of Chaguanas has also stepped in to assist the parents in raising $250,000. President of the Rotary Club of Chaguanas Michael Ibrahim said that since hearing of Shannen’s plight, the Rotary Club has come up with a plan to raise funds. Earlier this month, the Rotary Club together with the Catholic Church in Freeport held a garage and clothes sale.

He said a barbeque would be held on April 28. Ibrahim said they have also reached out to the Chaguanas Regional Corporation, the Couva/Tabaquite Regional Corporation and corporate companies for assistance. “We accepted this responsibility knowing the country is in a contraction. We accepted this responsibility knowing our corporate friends who have supported us in the past are now (cash) strapped. We accepted the responsibility because it is a child and the Rotary Club continues to work in the protection of the nation’s children.” “So we are requesting a small individual contribution of $20 per person by approximately 12,000 people. Many of the rotary clubs are supporting as well together with friends and well wishers.

Every bit will help,” Ibrahim said.

The Club is also inviting people to make any contribution they can to any Republic Bank branch account number 660297924401.

Michelle said she was thankful for all the assistance she has received from everyone and it made her see that there are a lot of good people out there. “You see sad news everywhere and it has really opened my eyes to see that there is so many good people out there that have come forward to help in anyway they can and we are very thankful,” she said