“We believe in our cause and we believe that the community will come together in support of this fundraiser,” said Stephanie Martinez, long-time Miami Lakes resident and stepmother to six-year-old Alexandra Valdes, affectionately called Alex, who suffers from Phelan McDermid Syndrome.
Phelan McDermid Syndrome is a rare genetic disorder with a wide range of symptoms, primarily autism related symptoms associated with delays or complete absence in functional language, sensory issues, cognitive comprehension, motor control, seizures, kidney issues and sleep disturbances among others. Alex's symptoms are mainly associated with communication.
“Alex does not speak so we have become excellent guessers identifying what she may want in a specific time. This is hit or miss and sometimes can draw out in full tantrums for minutes or hours,” said Martinez.
Alex also has difficulty walking due to one of her femurs growing inward which causes her to trip. The family is currently looking into orthopedic options to correct or delay any more difficulty in movement.
Martinez and her husband, Frank Valdes, are holding various fundraising events in the Miami Lakes community beginning in February and concluding in the summer, hoping to raise funds right before a special needs camp begins.
Alex attended the four week camp last year after the family was able to collect enough money to cover the costs, just over $1,000 dollars, through a garage sale. The camp is hosted by the South Florida Autism Charter Schools (SFACS) which is the only charter school exclusively for students diagnosed with autism spectrum disorders who reside in Miami-Dade and Broward Counties.
“Although she does not speak, when shown pictures of last year's camp her eyes opened wide, she smiled from ear to ear and flapped her arms in excitement. We can tell that she is looking forward to participating in it this year as well,” said Martinez.
Following the success of their garage sale last year, Martinez said they began brainstorming for different ways to raise funds, and more importantly spread awareness about Phelan McDermid Syndrome and Autism. Martinez and her husband have expanded their fundraiser for 2014, and have found help from local vendors and businesses to help fund not only Alex's camp tuition, but enough to send another child in need.
“There are so many families who are dealing with Autism and rare genetic disorders that are in debt due to some of the things they need to purchase in order to facilitate the lives of their loved ones. Knowing firsthand that there is a great need, we thought it would be great if we could help another family with one less worry,” said Martinez.
The fundraising events include Garage Sales on Saturday, February 15, and in April (date to be announced), at 1072 W. 64 Street, Hialeah, from 8 a.m. to 2 p.m. Community members are invited to donate unwanted items for the family to sell in the garage sale. Email FundraiserForAlex@hotmail.com for more information.
Another fundraiser will be “Menchies Dine-In Night for Alex” on Saturday, March 1, at Menchie's of Miami Lakes, 7309 Miami Lakes Drive, from 11 a.m. to midnight. Mention Alex's Fundraiser and a portion of purchases will go toward fundraising. Raffle tickets will also be on sale at Menchie's Dine-In Night. First, second and third place winners of the raffle tickets sold at the Menchie's event will be named in May, exact date to be announced.
Fundraisers are only the beginning for a family who hopes to inspire a greater change in the rare genetic disorder community. After looking into grants and financial assistance to afford the summer camp, Martinez found that resources are scarce. Additionally, veterans with special needs children, like Martinez's husband who served a total of 7 years overseas, are more likely to reenlist to afford the cost of medical treatments and related expenses.
“We were appalled that when it is most needed to be surrounded by family and have that support between the child's parents, active military or veterans found themselves hundreds and thousands miles away aching at the fact that they were not able to be physically there for their children's needs,” said Martinez. “With all of the things our men and women sacrifice while serving our country, stressing about their special needs child's necessities should not be one of them.”
For those who wish to donate to Alex's Fundraiser, visit the virtual donation page at www.giveforward.com/fundraiser/9cw/fundraiser-for-alex. To contact the family, email FundraiserForAlex@hotmail.com.