Deirdre The Diva is forever a 5 year old girl. She passed away in October 22, 2012, at her 5 years 2 months of age. She had Spinal Muscular Atrophy Type 1.
Born in Puerto Rico, she took her family into an adventure within the US Mainland. When she was 4 months old she had a respiratory arrest. She was in PICU for three months and doctors gave us no hope that she would live. Thanks to parents from all around the world we got the right information really fast, and we found out about Dr. Bach, Dr. Swoboda and Dr. Schroth. Catastrophic Funds approved an emergency flight, and so Deirdre was taken to University Hospital in Newark, NJ. Dr. Bach along with UMDNJ's PICU staff saved her life. From that moment we had to stay in Newark to ensure Deirdre would live. The sacrifices was beyond worth it. Deirdre was with us for 5 years 2 months. God sent us the right tools to help Deedee, and keeps blessing us with her invisible presence as an angel...
Deirdre followed the Non Invasive Approach to treating SMA, and a specific routine everyday. Twice a day, morning and night, we did Deirdre's respiratory treatment which is mainly: vibrations/percussion chest physical therapy, positioning for secretion drainage, coughing with Cough Assist, and suctioning as needed. If Deedee was getting sick, this had to be done at least every 4 hours.
Deedee finished Preschool and began Kindergarten in Fall 2012. Her day included home-bound instruction, therapies, and movies. She enjoyed her school sessions very much, especially arts & crafts & music. She received physical therapy (range of motion stretching and exercises), occupational therapy, speech therapy, developmental play, and of course, some leisure activities (hey, not everything can be just work!). We made her go cycling at least 3 times a week, and she got in the pool once every two weeks. Just a week before her sudden death she had begun hippotherapy.
Little by little everyone around her realized just how intelligent she was, and how strong was her thirst for knowledge. She got bored easily, and had a serious demeanor. She enjoyed her movies, being deeply fond of the Wonder Pets. She admired Pocahontas and Mulan above all, and kept Ariel in her heart. She used adaptive toys such as Figit friend and single-switch computer games. Deedee loved painting, and reading pop-up books.
Many possibilities were ahead in her path... Deedee came down to Earth to tuch many lives and accomplish things we can't even begin to fathom. Every single day we witness the greatness and beauty of so many small miracles... through her... because of her. In 2011 she went to Camp Jr at the Newark Museum and she was back again in 2012. She won a trip to Virginia Beach and visited Busch Gardens. In September she went to Starlight's Camp Pontiac in New York where she experienced a weekend of family outdoors activities. October brought in fun: a Spooktacular Halloween at Sesame Place, Spook at the Bronx Zoo in NY, and a night trip to the Adventure Aquarium where she enjoyed the fountain's dancing lights a lot...
Sadly, October plans were interrupted by her death...
She had in her plans a visit to the TurtleBack Zoo, going to a Trunk and Treat in Bayonne, visiting Sesame Place for Thanksgiving, going to the Disney princess show at the Prudential stadium, greeting Santa at the beginning of December, and then going to what was going to be her big train adventure: Her big Make a Wish trip to Disney where she was to meet Pocahontas and Mulan. The year was going to end with us back home... making plans to take her in a cruise trip to Puerto Rico so she could meet her great grandma and her grandparents... Plans... All of them gone, and not a bitter-sweet bundle of what could have been... of memories taken away.
DEIRDRE VALERIA MEDINA RIVERA
Aug 17, 2007 - Oct 22, 2012
Deeply loved. Deeply missed. Our world did end with 2012... Our world was her.
