ERIKA SPAIDE

From Danny Aruj, our Director of Inspiration: "Erika Spaide was once an outgoing and beautiful little girl like any other. She is still a beautiful young girl, but at the age of five she started having seizures and was diagnosed with Batten Disease.

(Erika Spaide in her early years.)

Since her diagnosis, Erika has lost all of her motor skills, including vision and speech.

There are four different types of Batten Disease. They are classified by the age the child is at the onset of the disease.

Erika has "Late Infantile Batten Disease," as she was diagnosed at age five. The disease only affects 2-4 children in one hundred thousand.

Today, at 17, she needs to be cared for around the clock and tube fed. Included in that care are aerosol treatments every two hours, chest percussion therapy for her lungs every four hours, and 18 medications per day."

(2002 Family photo of Gina, Erika, and Kim) Erika lives with her 20 year old sister, Gina, and her mother Kim, in Miami, Florida.

Kim is a devoted single mother, (according to Kim, Erika's dad left when Erika was two and sends no money to the family), who personally cares for Erika when she is not working as a scanning clerk to try and earn enough income for housing and Erika's medical costs.

Kim misses work often due to Erika's ever-changing needs, and is grateful to work as much as she can for a company that understands her plight. There is more, but the bottom line is that they desperately need money for affordable housing and repairs on their six year old wheelchair accessible van.

From Kim, Erika's Mom: "Erika is a beautiful spirit, who loves horses, and lights up the room with her presence.

My dream is to give her and my other wonderful daughter, Gina, (22 years old, who has committed to living with us as long as I need her help) an affordable home. (Loving sisters Gina and Erika)

We have moved seven times in four years in that search for affordable housing, and it is wearing on me.

We have virtually no furniture so that we can move easily. Recently we rented an apartment, and on moving day we showed up with what belongings we had, only to be told that it had been double rented by mistake and the other people were first...so we had no place to go.

Every day of my life is a struggle.

Our van, which was donated to us seven years ago in a fundraising event and for which I am very grateful, desperately needs many repairs that I simply can't afford.

First and foremost, we need a set of tires, as I do not feel safe on the bald ones we have. I need the brakes checked as soon as possible, too.

We should be eligible for Section 8 funding, but so far we have not been able to receive that funding. I have been working with the Mayor's office, our Congressmen and women, even the Governor's office, but nothing happens.

I was told I was pre-qualified for a surtax program, but have not seen any of that funding either. As the only known child with this disease in South Florida, Erika was even featured in newspaper articles and on radio stations, where we were told a lot of help would appear...yet nothing.

The little bit of physical therapy Erika gets is paid for by Medicaid. I used to pay out of pocket to have someone come to the house, but the lady who used to come left to have a baby and I haven't been able to find anyone else.

Erick's massage therapy is being taken away sometime soon, and then I will have to pay out of pocket if I want her to continue, which I do, of course.

She also needs a Hensinger head support for when we travel in the van. It costs about $129.00.

We are grateful for help from wherever it can come. Thank you so much for including us in your mission in helping children with Batten Disease.

I do feel blessed that I have two beautiful daughters, and know that there are others on this earth suffering more than me."

From Kathy Ozzard Chism: "That last statement speaks volumes for why Kim and her family are perfect Life Challenge Recipients for DREAM ONE WORLD.

Our LCRs see their challenges as gifts, and DREAM ONE WORLD aims to be a place where all who can't find assistance elsewhere can go.

Our intention was to repair their van as soon as possible, get the neck brace for Erika, find volunteer therapists, and work on finding them a place to call home.

Thanks to our donors, we were able to purchase the special neck Hensinger head support for Erika, and she has received it!

We also owe a HUGE thanks to the following people at

Armstrong Toyota, 29330 South Dixie Hwy., Homestead, FL 33030:

Craig Koning, Shop Foreman

Mike Rodriguez, Service Director

Willie Rodriguez, Service Writer

These three men made it possible for Kim to receive the following on her van at no charge:

Four brand new tires
A wheel alignment
An oil change
An A/C check
Changed all wiper blades front and back
Fixed rusted spots on the roof
Washed car

Even though the van is a Chevy Astro, this wonderful Toyota dealership took care of these items, and we are all grateful to them for their kindness. If you happen to be in the Homestead area, stop by and thank them in person!

888-302-9586

www.armstrongtoyota.com

Kim then took her van to Service Manager Juan (J.C.) Herrero at:

Kendall Chevrolet, 8455 S. Dixie Highway, Miami, FL 33143

who did the additional following services at no charge:

Multiple point inspection
Alignment
New air filter
Replaced pitman arm, idle arms, and both outer tie rods

We are so grateful to J.C. and Service Consultant Justo Ruiz for their incredible gift to get the Spaide van in tip-top shape again. Do thank them in person if you are in the Kendall area!

1-800-631-4156

www.kendallchevy.com

We also want to thank Linda Crowell, who has offered a visit to her horses and other animals for Erika.

Alicia Sirkin, BFRP Bach Foundation Registered Practitioner, donated two one hour sessions with Erika's mother Kim and sister Gina, as well as the essences formulated from those sessions. We are so grateful for her time and wisdom in this important healing gift. www.flowerhealing.com

A big thank you to Carlos Donate of Gator Graphics as well, who is donated all the printing for our Batten Disease Charity Cut-A-Thon, as well as other printing as needed - we are grateful!

Please visit the "Charity Cut-A-Thon" page at left under "Events" to view photos of an incredible event we created to help Erika and other children like her...and to learn what else we were able to give this family because of it! We were also able to donate more to Batten Disease research.

Please click here to Donate Now to assist Erika Spaide and others with Batten Disease. You will be sent a tax deductible receipt with our thanks.

You may also send a check to: DREAM ONE WORLD, P.O. Box 12355, Santa Rosa, CA 95406 Thank you.