HAPPY 8th BIRTHDAY, DEEDEE!

The Lion King: Remember Who You Are

This year Deedee's birthday theme is The Lion King. She loved this movie with passion, and because of it she understood very well what is the Circle of Life. She understood about life and death. And she understood the importance of being true to yourself, and that as life went on after death everyone that seems to go away lives on within us, within our hearts.

Visiting Deedee's Star

We celebrated going to Give Kids the World, checking out Deedee's star. Located in the Potted Galaxy, 563134. We will forever be grateful to the Gaynor Family, who put up a star for Deedee in their visit on 3-3-2013. In the notes she is mentioned as Sofia's sister, who passed away and did not make it to her wish trip. 

It is impressive how the galaxies have grown... Our first time there the tower was new, and there were only 3 galaxies. It is all bitter-sweet... Beautiful, but bitter-sweet.

And where can you find Deedee's star? Here, of course... 

"Deedee the Diva 4 Ever"

The guardian of the castle.

Inside the magical meadow.

Back home, we had a surprise for Deedee. Of course we had cake!

Kali was happy to assist in her sister's place...

And she blew the candle in Deedee's name.

Deedee's godfather was also here with us.

And here we are, our little family.

May there always be an angel watching over all of us.

May that angel always be you.

Our Diva, our Sunshine, our inspiration....

Happy 8th birthday, big girl!

May all your wishes come true.

May your days be filled with happiness and joy.

May you live in blessings and walk in beauty always.

I love you.

We love you.

Always remember...

BABY EIRIAM NEEDS YOUR HELP

Hello everyone! Please help with this fundraiser. This baby girl is Eiriam. Right now she is at the Pediatric Hospital in SJ, Puerto Rico. She was diagnosed with Spinal Muscular Atrophy Type 1, the same illness that Deedee had.

Her mom is going through all the things that we went through when Deedee was there... Just like we did with Deedee, they are trying to give their baby a chance at life. They want to take baby Eiriam to the US so SMA doctors can treat her. There is not much help around them. Please spread the word and help with what you can: Prayers are always welcome, donations are also welcome if you are moved to do so.

Baby Eiriam was born on July 2, 2014. She is intubated, She's been fed via naso-gastric tube. Lungs have been collapsing, and she needs expert care right now. Her family has communicated with Dr.Bach, but none of her doctors back in Puerto Rico feel the need to help her come to the US mainland. They feel she has a terminal illness and there is not much to do but take her home and give her love.

As the whole SMA community knows, this is not true. Yes, there is a diagnostic but there are choices for care and means to provide plenty of quality of life. Kids with SMA with a terminal prognosis have been known to live for more than 5 years, many leaving doctors and other professionals baffled.

Doctors told us Deedee would not live  beyond 1 year. She was with us for 5 years and 2 months, and she lived an outstanding life filled with miracles, love and quality of life.

Please help baby Eiriam have a true chance to live.

BABY EIRIAM's GOFUNDME

PLEASE CLICK HERE!

In Facebook, please contact her mom Mairie Piikeetee Maldonado or her grandmother Magui Perez for any information that you may want to share, or just for the support that they definitively need.

Thank you in advance for your help!

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.