Thank you again to everyone who made this wheelchair possible for my sweet boy. Spinal muscular atrophy will rob my child of so much and has already. It affects the ability to stand, walk, breath, speak, and move anything in your body that has muscle. Kingston now almost 4 can finally be active with other children his age because of his new wheelchair. The pictures below is of him in a 5k race he competed to bring awareness, and raise money to find a cure to his disease. Spinal muscular atrophy is a terminal disease with no known cure that will create huge limitations in his life. Kingston is a fighter and we will not let this disease go on without a fight. You have all heard of the als ice bucket challenge by now I'm sure. Sma is just like als except it happens to young children who didn't have a chance at normal life from the start. I challenge you all to tell someone about sma today! #BeAware
I am happy to announce that Kingstons' wheelchair has arrived. He's so tickled. He zooms all over the place where before just hitting the rug was a stopper for him. He's so happy to be moving at a pace his brother can barely keep up with... Unfortunately he cant use it to its full use as of yet because last week he had a bad accident and feel while doing some weight baring and broke his femur :( he is in a cast that wraps around his waist and down his right leg to his toes. He isn't in the chair correctly while using it, and can only be in it for very short periods of time due to the strain the cast puts on his diaphragm. But he love love loves it. He is tickled and so excited about his new chair begging to be allowed in it. I cant believe how fast he is, you wouldn't either if you saw him in his last. It amazes me. I cant wait for these next five weeks in the cast to be over so that he can take full charge of his new mobility. My son is so resilient he has even found a way to crawl around the house with only one leg being used. He is my little trooper, and nothing can hold him back. This wheelchair is so light I can lift it with my index finger. I knew it was the lightest pediatric wheelchair in the world but I had no idea....... I would like to thank you all for what you have given my son. It truly is a dream come true to be able to have the ability of mobility when before you couldn't do a thing without mamas help. (what a confidence boost already) and to chase after his bigger brother and him not be able to get away is priceless. smiles all over and more to come when the cast is off and full mobility is achieved. ( I will post a video the day the cast comes off.) thank you to all who made this possible. thank you , thank you , thank you.
The time has come and the wheelchair should be shipped this week sometime, and probably arrive the next. I'm super excited to see how Kingston will react to his new freedom, and the ability to be able to keep up with his peers. Thank you all for making this dream a reality. When it arrives i will post pictures for you all to see the happiness you have created by helping my son.
It is official the chair is being made for my sweet boy. It takes 4-6 weeks from start to Kingston. He is looking forward to it... Independence is just around the corner thank you all so much. I am so super excited for him, AND ME. Not only will it give him freedom but it will help me out as well. It can get tough trying to push a wheelchair, hold a baby, a diaper bag and managing my 4 year old while out in public. More freedom is in the future for the both of us.
Also make a wish came over the weekend to collect my sons wish. I was sure it would be Disney but he wants a snapdragon. It is a HUGE wish, and it surprised me greatly. It is a mobility wish that would give him even more freedom when his manual chair just will not do the trick. It has a standing frame to get kids eye level and at speed with other children his age.( it also is therapeutic for weight baring) it also has a seat to floor so that with the push of a button he can go to the floor and get out on his own. Most kids need power mobility on top of the manual. There are many places that a manual just will not work like lawns, gravel, very long distances where he would tire in a manual and end up being pushed. ( he doesn't know the advantages of the snapdragon he just saw a little boy that's legs don't work being able to do everything a normal kid can do) It was a video of a little boy named Charlie and kingston raved about how Charlie could win a race because he is fast. Its bitter sweet to me that this is the wish he chose. He wants so bad to be like other children his age. If the wish is granted it will come along with a trip to the UK for a fitting and to receive the mobility device. Disabled kids need a wide range of mobility tools. When ask if he would rather go to Disney he shouts "NO I want a snapdragon" when we tell him he might not get one he says " But I have too, I want to stand and run like bubby" The snapdragon is 40,000 not counting the 2 week trip he would need to be fitted. I was unaware that travel was a must. I often look to you tube to show my son other kids like him, I never knew what he was really getting from the videos I find. I'm overwhelmed that this is his one true dream. He is wise beyond his years. If make a wish can not grant his wish then Disney will be his back up wish. ( I was so looking forward to cheerio island lol )he came up with so many wishes I didn't know what he would say when they sat him down and spoke with him. Wow!!! Im trying not to let him get his hopes up but he just doesn't understand how the wish thing really works. He is a little boy that was told he could have any wish, he doesn't grasp the complicity of it all.
Hello everyone. So... Kingston was supposed to make his wish last Saturday but for good reason the foundation postponed until this weekend. He is so excited and now that the date is getting closer he is changing his wish daily. He cracks me up, some of the things his imagination can spit out. Today he mentioned a snapdragon (mobile electric chair for standing and getting to the floor independently.) so he can run faster than bubba ,he saw a youtube video of a little boy named Charlie and has been raving about him and his (walk like bubby wheels) ever since, It makes me happy to know that he is at peace knowing that most of his mobility needs will be met by wheels....... moments later he was watching cartoons wishing to go to dragon land from dragon tales, any commercial with Disneyland sets him off, and lets not get into pirates and neverland. Its a adrenaline rush for me to just keep up with it all. :) He rocks!!
I'm happy to announce that I contacted the company in Sweden who put me in touch with the direct U.S. source. They let me aware of a hybrid chair that isn't advertised that is 7 lbs lighter than the bambino itself. It called the hybrid bambino and is a perfect match for Kingston and will be able to grow with him, and one day turn into the bambino pictured above. How cool is that? It retails for 1,500 more than the bambino itself but..... They have amazingly gave me a discounted price that brings it down to what vendors are selling the bambino for. So he will be getting the better/lighter/more valued chair at no extra cost from my original quote from a vendor. I'm so excited!! As soon as my gofundme check arrives which will be any day now, They will start the process of getting him into his customized fit for him wheelchair.
I just can't thank everyone enough for making it possible for my child to have the best. It will make a world of difference in the lives of the entire family.
I will update everyone with the wish he chooses and keep you all up to date about his chair :)
Wow!! This is so amazing. I never in a million years thought that this would happen. Because of kind hearts, and helpful people my son will have the perfect wheelchair. This wheelchair isn't just any wheelchair but the lightest pediatric one that there is. With my sons disease it will be the best possible chair I could get him. THANK YOU for all your help. The chair is made to order in Sweden and will custom fit my child. It will take a little time for him to get but now because of so many open hearts I can now start the process on something I thought was impossible. THANK YOU SO VERY MUCH, You all have made this little guys world a better place. Much love from my family to yours.
I would once again like to thank every one who has been a part of helping us reach our $4000 online goal. It is breathtaking the overwhelming response that we have received. I was super excited about the progress being made even before the newscast. I had no idea that this would lead to a newscast or that I would reach my goal so fast. The amount of care was so great that people started emailing me wanting to know if they could still give even though my goal was met. ( reason for raising the online goal) I am still in a state of wonder. I wonder if im going to wake up from a dream. I cant thank every one enough. THANK YOU THANK YOU THANK YOU! Like all kids Kingstons age he is in that stage of wanting to do everything him self. It makes things extra tricky when in reality he just can't. Because of all the help he has received from the community for this chair there will be much more my child can independently do. I'm overwhelmed with joy and I thank you all for that. I will leave the page open to let every one follow Kingstons story and keep you up to date with the next stage which I plan to start very soon with a bake/yard sale(to be announced) I will add all offline donations from such events until I reach the 6000 goal and get him the chair pictured below. Once again Thank you all so much I will never forget what you have done for my child.
Wow I cant believe it, Every one is so vey kind and thoughtful to care so much about my little boy. This is so amazing I could scream, and I just might :) I'm really at lose of words...........well my son will soon have a new chair. Honestly The chair that he will have cost aprox. 6000 and I will be trying to raise the rest with hands on fundraising such as a benefit yard sale/ Bake sale, and things like that to give people a chance to meet my little man. Good things are happening and I feel so blessed. This site will stay up for others who's hearts feel touched and would like to help, or just follow my sons story. I will be announcing soon the date on the 1st yard sale/ bake sale. Thanks again my heart is singing with joy!!
Hello to everyone, and Thank you to all the kind people making good things happen. Fox news found out about wheels for Kingston and wanted to do a story. I cant believe I said yes. I normally avoid media at all cost but I will do anything for my son. He is the love of my life and he really deserves to have mobility. It will be on tonight at 10pm to those of you who are interested in seeing it.
The past week has been great. We played outside almost everyday at Kingstons playground. He was also super excited about the Easter Bunny, and we received the official date that Kingston will make his wish from the make a wish foundation 5/10/14. On top of that we almost doubled our donations. Wow that is so awesome. Im super impressed with how fast Kingston is reaching the community through the efforts of those who love him and are willing to share his story. Thanks to every one for the love they have shared and the donations that have been made. People have also been trying to find support through charities, and organizations. Im very confident that he will soon be in a wheelchair and maybe beyond. I posted a few pictures the first was on Easter morning he hadn't even looked in his basket yet and he just couldn't contain his excitement. The second picture is priceless to me. Cambria his baby sister was in her walker and he ask to get into his. They took turns following each other around until Kingston decided that he could just put his legs on the bottom of his sissies walker and hold on for the ride. I don't know which one of them enjoyed it more with the giggles filling the air from both. The third is of the love I witness each day between my three precious children. I would go to the end of the earth for any of them. Thanks again to you all.
Kingston says Hello. He is about to eat some waffles and then we are off to Greenville for three appointments. Im hopping to take him to the zoo after, if time and weather permit. He loves the zoo!! His favorite animal ladybird (the elephant) passed away at the beginning of the month. :( this makes us very sad) She was the first animal we saw and then the last. He would always have to go say good bye and tell her he loved her. He is so sweet, oh how I love him. It will not be the same without her at the zoo. I'm sure that with all the love that he has to share, he will find another animal to hold close to his heart.
We have almost reached the 25% park and that is awesome. Thank you to everyone who has supported wheels for Kingston. Please continue to share his page. much love!!
Well..... Make a wish has chosen to give Kingston a wish. He is very excited, I told him he gets one wish and it could be anything he said in an escalating voice and threw up his right fist and yelled I want to go to Neverland. He is so super cute. I ask him the next morning the same question and he had the same reaction but shouted Disneyland to see Donald duck and Jake. So who knows what this child will pick for his wish but, it looks like it will be a adventure of some sort. It would be super awesome if we could have his new wheelchair in time for whatever adventure he chooses as his wish. Any donations would be greatly appreciated and sure to bring on many smiles and much adventure through the ability to have mobility. Please help my child gain independence and thank you so very much to everyone who has shared his page and donated toward his chair. *much love to all*
We went on a short hike this weekend, and spent some time traveling forest service roads. My kiddoes had a blast. We saw a skunk in the wild for the first time it was awesome. we were about 10ft from it and watched it walk up a hill and out of site. Kingston loved it. He gets really excited when we run into wild life. He knows in order to fully enjoy it we must stay quiet(in this certain case it was a must if we didn't want to come home smelly) but once it was gone giggles filled the air. I hope for more memories like that day it was amazing.
Kingston has been slightly under the weather these last couple of days. Poor little guy! For the most part he is doing really well and its only a small cold. Due to muscle weakness he does have trouble clearing his secretions so choking has been an issue. We took him to the doctor and they added a new machine to his life to help, he isn't very fond of it but luckily it will only have to be used when he is sick for now...........
I would like to thank every one who is supporting and sharing wheels for Kingston it has been almost 2 weeks and im very thankful for the almost 500 dollars raised so far. We still have a ways to go and my son katahdin is still very much so wanting to paint some made with love paintings for supporting wheels for Kingston. Just mention painting in the comment box when you are making your donations if you would like one. ( He really wants to help)
Kingston gets to go see his favorite Disney characters today. (Jake and the Neverland pirates) He woke up with the biggest smile and is in the best mood today. Oh how I love this little man. It makes my heart sing seeing him as happy as he is today. Wish us luck that the place will be accessible.
For those of you that do not know my family there are 5 of us. My husband Trevor is a mechanic and works hard to support his family. I(Amanda) do not work due to the ongoing care that my son Kingston needs. Kingston has a big brother named katahdin and a little sister Cambria. We spend most of our time at appointments or finding ways to have therapeutic play. With Kingstons disease he has to constantly use it or he will loose it. I drive anywhere from 300-500 miles each week getting him the care he needs from specialists and doctors. He is a patient at the shriners hospital where he receives physical therapy twice a week. I feel that without them we would be no where. Kingston's favorite thing to do is go hiking and backcountry camping. Up until recently we would wear him on our backs in a kid pack. The trails we go on are rugged and full of adventure. Our family has a passion for the outdoors and nothing will keep us away. Now that he is getting bigger its harder to reach some of our favorite spots but we will not let his disability stop him from seeing the beauty of the earth. My goal is to do everything we can while we can with him, because there will come a day when I have to say no. His body is going to waste away and his muscles will completely die. A week ago he started having to use a ventilator during his sleep because his lung muscles are to weak to perform correctly after all there hard work during the day. The lungs are one of the most affected organs of this disease. Until this disease came into my life I didn't really give credit to all the hard working muscles in my our bodies. It takes muscle to do almost anything. We plan to fight this disease and not give in to all of the things it says we can't do.
Hello every one. I can proudly say that my 4 year old would like to help his little brother get a new chair. He wants sell some of his hand made art. (how cute and sweet!!) A $10 donation will get you a special made for you panting from my son katahdin in support of wheels for Kingston. He is super excited and has his paintbrush ready. If you would like a special painting with your donation just put the word painting somewhere in the comment box when you donate. Thank you to everyone who has donated so far.
My son kingston has a rare disease called spinal muscular atrophy(sma). It is a inherited disease that causes nerve cells in the lower part of the brain and spinal cord to break down and die. when this happens the brain stops sending signals to the muscles.This causes muscle wasting. My son kingston can not stand or walk on his own. His bodies muscles will waiste away and die over time. As he gets older simple tasks may become almost imposible. Currently he is a joyful boy who loves life. He loves to play and tries his best to keep up with his older brother. He has became to weak to efficently move his current wheel chair which weighs 37lbs. He weighs 29lbs so he would have to constantly move 66lbs to get around, and he tires almost as soon as he starts. I'm currently trying to raise money to get my son rolling again. The new chair weighs in at just under 12lbs and is one of the worlds lightest pediatric whealchairs. Please help my son regain his independance.
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