4 Paws for Ability Goes Viral

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This story is about the amazing work that 4 Paws for Ability does – that’s where I got my service dog London!!! 

“I’m not sure why, but people still ask us why we place service dogs with children sometimes. Let me help you understand, from a momma who knows first hand:

See this moment? 

I’ve never experienced a moment like this.

I thought about not sharing it for embarrassment of my ugly cry face, but i decided it’s too important not to share.😅

This picture was taken near the end of the day after my autistic five year old was finally able to sit down with his new Service Dog Tornado. He flew across the entire ocean, stopped in multiple states, and uprooted his entire routine to travel the globe for this. He was so overwhelmed through the day that he had to leave to take a break for a couple hours before he could come back. This boy is the strongest child I have ever met; he has faced countless rude and ignorant adults and children who do not understand him, who have hurt him, and who have not valued him because he is different. This picture captures the face of a mother who saw her child, who she can’t hug, wash, dress, snuggle and touch freely lay on his new Service dog of his own free will, with a purposeful unspoken attachment. This is the face of a mom who has seen her son experience countless failed social interactions on the playground in an attempt to have a friend. Any friend. Any kind of connection. She has sat with her son while he has cried at night for months because he has no consistent connections outside of the family no matter how hard he tries and no matter what he works hard on in his Autism therapies. It doesn’t transfer to the natural occurring world for him. And now she is sitting behind her son silently watching this moment, with the air sucked from her lungs, and no words to say. 

Holding her mouth and silently crying because she doesn’t want to distract him from the moment and break him away from a pure, honest, and truly fulfilling moment for her son-of his own free will. This is truly magic. Words cannot explain it. 

I have cried so many times for this boy, but this is the very first time I have cried for a reason like this. 

It’s new, it’s painful, it’s wonderful, and it’s grateful. I will always stand behind this boy (probably still crying 😂) but I am grateful that he will have Tornado to stand beside him. The 4 Paws magic is real. The wait is long, but this moment right here makes it worth every moment of waiting. It’s worth every fight for services for my son, every diagnosis, every new provider, every dollar spent, every paper filled out, every school meeting, every shed tear, every step forward, every step back, and every wonder of the unknown future. Some how because of this- because of Tornado- I know everything will be okay.” 🐾

Happy Birthday

Tomorrow is my 6th Birthday! Taylor and I decided that for dinner we are having french toast. Instead of birthday cake we are having ice cream sundaes! It is fun being a twin and having someone to celebrate my birthday with!

We have been having a lot of fun this winter so far. I like playing in the snow with Daddy.  I love sledding, but I am not a fan of the cold wind.

I had a wonderful Christmas with my family also. We got to visit with a lot of people, but unfortunely we all got sick just after Christmas. I had a small seizure when my fever came on. Thankfully it stopped by itself and I didn’t have to go to the hospital. This seizure was a bit differant then what I’ve had in the past. Mommy says I wasn’t shaking or convulsing. I wasn’t moving at all, didn’t respond to anything and just cried. Mommy is thankful for all the equipment we have at home to help me. It meant she didn’t have to call for an ambulance and they could just watch me after I stopped and just slept for the next couple hours.

We know that totally seizure freedom is virtually impossible for a kid with Dravet. I am lucky to only be having seizures with fever right now. Hopefully my year as a 6 year old will be as seizure free as my year as a 5 year old was!

I am so excited about tomorrow! Happy Birthday Taylor! (and me!)

November – Epilepsy Awareness Month

November is National Epilepsy Awareness MonthEpilepsy-Awareness-Badge

You may hashtags like #NEAM on Facebook and Twitter this month – that’s because November is National Epilepsy Awareness Month!  Team Kye celebrated this opportunity to create awareness with our Team Kye Purple Day on Friday November 21.  If you live in the Philadelphia area, you may have also see the Philadelphia Skyline and landmarks lit up in purple.

Team Kye was started with the mission to create awareness of what it means to live with epilepsy and a vision to enable Kye to live in a community where she was loved and embraced.  For that reason, we get excited about Epilepsy Awareness Month.

 

 Source: Epilepsy Foundation Eastern Pennsylvania3 million people have epilepsy

• 65 MILLION: Number of people around the world who have epilepsy.
• Nearly 3 MILLION: Number of people in the United States who have epilepsy.
• 1 IN 26: Number of people in the United States will develop epilepsy at some point in their lifetime.
150,000: Number of new cases of epilepsy in the United States
ONE-THIRD: Number of people with epilepsy who live with uncontrollable seizures because no available treatment works for them.
• 6 OUT OF 10: Number of people with epilepsy where the cause is unknown.
• 50,000: Number of people who die from epilepsy-related causes in the United States every year.
• 15.5 BILLION: Estimated annual cost of medical costs and lost or reduced earnings and production.
• 1 IN 10: Number of Americans who will have a seizure at some point in their life.
• 5 %: The risk that children of parents with epilepsy will develop epilepsy themselves, unless the parent has a clearly hereditary form of the disorder.
• 300,000: Number of children affected by epilepsy under the age of 15.
• 4TH MOST COMMON: Neurological disorder after migraine, stroke and Alzheimer’s disease.

 

November 15, 2013

Mommy and Daddy started “Team Kye” with the intention of spreading awareness and educating the community about Dravet Syndrome and epilepsy in general. They wanted me to grow up in a community that knew how to keep me safe and would support me. You have made there vision come true with all the support this incredible community and extended community has surrounded me.

Can you believe that we already raised over $13,000 for 4 Paws for Ability? We are totally overwhelmed with the kindness people have shown.

We had a goal to complete our fundraiser in one year. You made it happen in less then 2 months! We have enjoyed getting to meet so many new people during this journey. The financial support you shared with us was incredible. The kindness and love that you continue to share is never taken for granted and means more then we can ever explain.

Next Fall I will get to go meet my dog. He or she is either a puppy right now or about to be born. My dog will be about 1 year old when we meet. Over the next year my dog will be training hard. When I go out to Ohio I will be training with my dog for 2 weeks. If we pass all our tests, we will get to come home! I am very excited to meet my dog. If you ask me about it, I usually respond by panting like a puppy and nodding my head.

With much love and excitement,

-Kye

 

October 16, 2013

Busy, busy with planning my Fall Paw Festival. I am so excited to see everyone’s puppies dressed up in costumes! I can’t wait for all the fun and to meet lots of new people! Please pray that we have good weather! We have so many wonderful people helping out. Thank you so much to everyone!!!

Other exciting news… we have raised 25% of what I need before a dog is put in school for me! This last month has been busy with the start of our fundraising. Mommy and Daddy are beyond amazed at everyones kindness and generousity. Please pray that we make the right choices for our fundraising and that everything will go smoothly. Please also continue to keep me and my to be service dog in your prayers. I know God has the perfect plan and the perfect dog already picked out for me.

October 8, 2013

Just a quick update to let you all know how life is rolling… I am still really enjoying school! My favorite things are the bus and singing 5 little monkeys. Well at least that is all I tell Mommy about everyday! School was able to get the nursing situation figured out for my bussing. I now have the kindest van driver and nurse take me home everyday at 2:30. They sing and play with me all the way home. No wonder I am always so eager to get on the bus! I love my teacher and they take such good care of me!

 
We are working really hard to raise money for my service dog. I am excited to see everyone’s dogs at my Fall Paw Festival. I think dressing doggies up is really silly! I can’t wait!
 
So far I have been staying healthy, even with being back in school! Next week I will get my flu shot. Please keep me in you thoughts and prayers. It is always a stressful time since we know there is a possibility I could get a fever from the vaccine and fevers often mean seizures for me. It is a risk we take because the small fever I could ger from the shot is much better then if I would get the flu!

September 13, 2013

A few days ago I told people that I was accepted to get a service dog. We haven’t even planned our first fundraiser and some amazing people have already started donating. Thank you to everyone who has shared my donation page, prayed for us to be able to raise the funds and for those who have already made donations. Mommy tells me that I am surrounded by very special and amazing people. My whole family is blessed by your kindness.

Love – Kye

August 28, 2013

First day of kindergarten! My school nurse drove to my house and then a real school bus stopped at the top of my driveway!! I was so excited I just ran right up the driveway! My school day went pretty well. Today we

learned a lot about the rules, we practiced the fire drill and I got to eat lunch at school. I even took my afternoon medicine nicely for my nurse! Mommy and Daddy came to pick me up from school. Soon a nurse will be able to drive home on the bus with me too, but since I am leaving school early everyday to still get my much needed nap in, they had to hire  someone new and we need to wait for all the paperwork to go through.

Please continue to pray that I do well in Kindergarten. Mommy is still nervous that I am going to get too tired out and will loose my great seizure control. So far school seems like a great fit. Please keep all my teachers, aides and nurses in prayer that they have the patience to teach me, care for me and challenge me.

Lots of love from big Kindergartener Kye!

August 16, 2013

Kindergarten orientation was today. Can you believe I am big enough to go to kindergarten this year? Mommy can’t! Today I met my teachers, aides, classroom nurse and therapists. My favorite part of the day was that I got to ride on the school bus “all by myself”! Mommy and Daddy had to stay in the school while I got to go with all the kids on the bus. Please keep me in prayer while I transition to school. This is going to be a big change for my whole family! I am going to be staying in school until 2:30 in the afternoon. This means no nap and school is going to have to give me my afternoon medication. Mommy keeps reminding me that I have to be a good girl about taking my medicine at school.

Daddy has been working really hard getting ready for the half marathon on September 15th. Go to http://tinyurl.com/runforkye to see his page. All the money he raises goes to the Dravet Syndrome Foundation and helps fund research into Dravet Syndrome. So much has been learned about my type of epilepsy over the past 5 years. If we can continue to research it, maybe we can find ways diagnose, treat, and one day cure it! Tonight Daddy ran 8 miles on the treadmill for me. It is a beautiful night for a run, but instead of getting to run outside after work before it got dark, he took me to my soccer practice. Isn’t he a nice Daddy?

Hope you are having a great summer. I am enjoying my last few weeks before school starts!

Oh, and stay tuned… I hope to have something exciting to share with you in a few weeks!

Love,

KYE

June 1, 2013

I am very happy to share with you that I have still been seizure free! My last seizure was March 3rd 2012. To some people this may not seem like a huge deal, but if you look at it from my perspective, I think you may realize the significance.

You see a year without seizures means that I have had a full year to learn and grow without lapses in time or regressions from the seizures and rescue meds. I’ve gotten to celebrate, actually celebrate every holiday with my family. No hospital stays or my brother and sister having to be shipped off to other family so Mommy and Daddy can make sure I am ok.

That last seizure I had, I woke up in the ER asking if it was my turn to ride. You see… I had a seizure on the way home from my horseback riding lesson that I got for a birthday present. I don’t remember getting to ride at all and that was a full hour before my seizure started!

Mommy and Daddy tell me that they cherish these good days. I have learned so much this last year. I sing actual songs, hold conversations, can tell you what I did at school, can ask for things I want. I am doing really good at being potty trained now. My balance is better and I am getting stronger. This seizure free streak most likely won’t last forever… not to be negative, but that is just the reality of the type of epilepsy I have. However, my next seizure could be in 5 minutes or in 5 years. There is no predicting when it will come. Until it does, I will keep on growing and singing and laughing and loving.

Oh, and I will keep on raising awareness for Epilepsy and Dravet Syndrome. Maybe someday a really smart scientist or doctor will figure out how to predict seizures and figure out how to cure Dravet Syndrome!

With lots of love,

-Kye