About Disney's Take on Line-Jumping For The Disabled

There has been qite a stir in the SMA community, and special needs kids all over the US, as Disney is changing the way they handled the special needs community... If you want to read about it, go to this article:

Disney's Line-Jumping For Disabled To Change Because Of Abuse

This is what we have to say about it:

"Imagine a child who is quadriplegic (cannot move arms, legs, sand or move at all), non-verbal (speaks with grunts), has a ventilator for breathing (either with a bipap nasal mask or a traqueostomy), must be suctioned all the time as he/she cannot control secretions and may choke if not suctioned, all equipment and wheelchair depends on batteries to work... This child cannot be "safely transferred"like any other kid and must stay in his/her wheelchair where all the emergency equipment which is used daily is kept at all times... A wonderful trip top Disney or any other park is a dream that comes true to the child, but the adults surrounding the child have 2 main tasks: Keeping up with the care and ensuring the kid has fun. Notice that the adults barely go by having the fun that normal families have... Our fun is watching the eyes of our kids light up whenever they get to visit these parks... Even if all they get to do is a meet and greet with characters and the most action they can take is a ride that most people think lame and mild such as Its A Small World. There are many things to consider, especially when it comes to special needs... All Special Needs kids have rights that are warrantied and backed up by the government, and that must be kept being reinforced so fairness is at least feasible...

I will leave you with this thought... Sesame Place is also a wonderful park targetting kids... When I visited with my special needs daughter I did not get any VIP pass, or any special thing... But the people who work there are so sensitive to what they have in front of them that my daighter was treated VIP even if we never asked. I was floored by all the positive attention she got, and I will never forget that yes it was difficult to make the day work... but the people around us made it all magical and worth it. That was Sesame Place... I don't see why Disney would have to be any different.

Another point, all special needs kids have all documentation for their conditions... Normally parents carry copies with all paperwork all the time, just in case... All the parks need to do is require that documentation if the severity of a special need is not immediately apparent...Everything else should be common sense.

Kudos to the Sesame Place for being able to have common sense and live up to doing it all for the kids. Disney: Pay attention, and learn!

August: SMA Awareness Month

August is SMA Awareness Month. Each year, families from all around the globe gather at sunset and light a candle in honor of SMA Angels and SMA Warriors. The candles glow with all the hope that we focus on them, hope for treatment and hope for a cure.

We lit a candle in honor of our SMA Angel, our diva Deirdre. We pray that a cure is found soon so many other families do not have to go through loosing their precious kids. In this day and age, we know that a cure is out there and treatment should be available for everyone (not just SMA kids, but kids with so many conditions around the world). We pray that the hearts of the people in power stop being so hardened, so everyone has a chance to live.

Deedee, you are not forgotten. Your memory inspire many projects that little by little will take shape... and will help others the same way that so many helped you. Keep on being with us in spirit, guiding us. Keep on touching many lives.

Deedee's 6th Birthday

Our Diva's birthday is approaching, and although she is not here with us physically we know that she is watching every single move that we do... We want to do something special in her memory. Any suggestions?

Deedee's Eye Gaze System Donated to SMA Family

We think that Deedee must be happy about this...

An SMA teen received Deedee's eye-gaze system as a donation from us. Deedee's speech therapist helped us find the right family, and it is certainly very fitting that another SMA fighter get it to have another tool for improved quality of life... and for communication. We know that Deedee must be smiling from Heaven...

Deirdre Granted a Star at GKTW

Deirdre Valeria became a star of her own in October 22, 2012. Nevertheless, it weighted heavy in our hearts that she did not get to complete her Make a Wish trip which was scheduled for December. The plan was to take a train from Newark, NJ and travel down to sunny Florida where our Diva would meet Pocahontas and Mulan in person! We were asked if we wanted to do this trip in September, but we went with the idea of December as we wanted her to see Disney in Christmas... We would have stayed in Give Kids the World for a week, and she would have visited her favorite princesses. Sadly, this did not happen...

During the past two weeks we had the privilege of meeting two other families who were close to us through our journey. These families have two SMA princesses: Sophia Gaynor and Stella Turnbull. Both girls celebrated their birthdays visiting the Magic Kingdom.

Sophia made her dreams come true through Make a Wish and was staying at GKTW.

 

Stella had her Make a Wish trip three years ago, and ever since she travels once a year to celebrate her birth. Stella visited GKTW to have some family fun.

During our second visit, we asked the GKTW crew if it was possible for Deedee to have a star since she almost made it there as a wish granted by MaW. After some consideration, and to honor hr memory, they handed us a sparkling star... This sweet gesture deeply moved us. We wrote a small message for Dee in its core, and handed the star to the Star Fairy so she would take it up to the sky and place it in its rightful constellation. Soon we will receive an invitation to go see the star, that should be placed in the Castle of Miracles tower...

Thank you, Give Kids the World. Right now we are completely uprooted and have no physical place to visit Dee as her resting place is in Puerto Rico. Knowing a star with her name is in such a meaningful place inspires us. We are really grateful for this gift of love.

Deirdre Valeria Medina Rivera. Forever loved, forever missed. May the whole world know: She was here on Earth, a living miracle. Now she walks with us as our guardian angel, and as our North Star.

As A New Year Begins

Reminiscing on Deirdre's life, acknowledging that our lives were changed forever for the better. Deirdre brought the best in all of us, and she will keep on making things happen. We know it.

From the beginning me and my husband understood that there was no space for pity or for helplessness. Deirdre needed tools and actions, and so we tried our best to comply. We love her for all she is, for all her accomplishments, for all her dreams. She did not let anything stop her. She dreamed big. She worked hard, so she could have the "privilege" of partying hard. She saw and experienced the world. We are always very proud of everything she did and everything she is doing right now... because we know that as an angel she keeps on being very busy.

Thinking about all that Deirdre inspired, I wrote this in my personal professional blog... Nothing but the truth.

2012

"This year marks big changes in my life. The focus was basically a big lesson on how life should be lived to the fullest, and about the simple fact that if you want to do something just do it. Some people may see that for the past 5 years I vanished from the workforce, but the reality is plain opposite. For 5 years I ran the most important entity that I will ever know, Deirdre Medina. I was in charge of all administrative duties and well as services and public relations. Deirdre demanded a caregiver and an advocate that had an iron fist for “business matters”, as well as a compassionate spirit. This has been the most challenging job that I have mastered… a job with many hats, unpaid in monetary terms, with high stress 24/7, and where all decisions were life or death matters (literally).

As administrator I had to run a sound finances and accounting department so all of Deirdre’s needs were met. Therapists, therapies, equipment, medicines, doctors, and nurses where part of the daily activities and daily expenses. Deirdre needed specific care, and supervision of her physical and mental health was a daunting task. I had to become Deirdre’s R&D team so I could find answers to her daily dilemmas… answers that normal service providers would not give. And so her challenges inspired answers that helped other families with kids in her situation. I researched every single day for 5 years. I looked for answers as professionals gave us the cold shoulder… and got them. Creating and maintaining Deirdre’s website we raised awareness about her illness, guided new families, gathered funds for her needs, and promoted all the important events of her life.

Thanks to Deirdre Medina  I have been web designer, graphic designer, marketing team, research and development, assistive technology professional, event coordinator, accounting/finance department, human resources department, physical therapist, alternative medicine practitioner, occupational therapist, special needs advocate, special education advocate, special needs media specialist. And underneath all this, I was also honored to be her mother.

It has been the most demanding, hard job that I have ever done. I never even imagined I would learn so much, and put into practice so many things I learned from co-workers and friends. I never imagined that my knowledge in Information Systems would be the main tool that would facilitate my daughter’s learning and daily life. Thanks to technology she was able to have a voice via an eye-gaze system. Thanks to technology she could play with a toy even if she could only barely move a finger… activating it via movement detection sensor. Thanks to technology she enjoyed books, and she aspired to become an animation artist. Helping her I learned so many possibilities for special needs kids! She gave me the biggest gift in my life, she showed me how to love technology because of what it can do within a positive environment.

2012 was the end of my world, I lost Deirdre. But I see her alive in my finding out how to reach others and teach them all I have learned… Running the Deirdre Medina empire assured me that I can do anything when I put my mind to it, and that without sacrifice there is truly no glory. Sacrifice, hardships… challenges that develop your character… experiences that make you grow. Things are different in every way. 

I hope that 2013 is the year where the command of “just do it” comes true. I’ll keep dreaming my diva’s dreams (Deirdre was known as Deedee the diva), and I’ll use all within my power to make them all happen. True happiness comes when you help others with your heart in your open hands. I look forward to becoming a media specialist and keep on gaining knowledge in AT and special ed. I also look forward to creating Deirdre Medina’s Foundation… for helping SMA kids who are abandoned in hospitals, and to raise awareness about SMA… But that is another story…

Right now 2012′s last days are bittersweet, as it is the time to enjoy my homeland as I am getting ready for a new journey. Florida, here we come! May Deirdre guide my path, and smile from Heaven… as I look for my destiny."

From Vivian Rivera: Artiste & Techie, "2012"