A WORD TO READERS:

This Blog is intended to educate as many as possible. Our story is unique as is each story of a special needs child.

Thank you!











Lisa












Sunday, May 30, 2010

Just a note:

I'm new at all this technology stuff (aka blogging) so bear with me as I make some changes. This week we encountered new opportunties with 2 TV news interviews. I've posted the link to one of them, along with some other links.
Its hard to believe we leave Fargo in 5 weeks; 5 days from today... WOW! Fundraising is still ongoing and we are making progress...We are still in need of help so please if you can help in any way please visit our GiveForward site.

Donations are also being accepted at all Wells Fargo Bank locations --Ethan Radtke benefit donation fund account. Donations can also be made to our paypal acct: Ethanwalks@gmail.com.

That's all for now. Hope everyone has a wonderful Memorial Day weekend.

Tuesday, May 25, 2010

OUR NEWS STORY

5/25: Tomorrow our story will be airing on KVLY 11 & KVRR FOX... can't wait to see what the stories will look like!

Monday, May 10, 2010

Going to Dusseldorf

We've been approved and we are going to Germany. Mixed emotions right now, scared, excited, disbelief... So much to do, so little time. Our 1st appt is July 12th, marrow extraction the 13th and transplant on the 15th (our day of miracles)... More to come!

Saturday, May 1, 2010

Ethan's Story & Wish...

Ethan Deserves to Walk -Our Story
On a day prior to this past Christmas, Ethan was being picked on by his typical brother and sister. In an attempt to resolve the matter, his Mom asked him what he wanted from Santa for Christmas…After thinking about it for a minute he replied with big eyes… “Mom, I want Thomas the Engine Trains and…new legs that work!”

If you couldn’t walk, and you were told that you never could, would you be sad? If it was your child would you do anything at all to give him the chance to experience life like his brother and sister? If it was just a possibility don’t you still owe it to your son to move heaven and earth for the opportunity to allow him to walk and run or even ride a bike?

Read on to hear Ethan’s story and to find out how you may be able to help.


Family Background – How Ethan got here
The youngest of 3 children, Connor (7) and twin sister (Ashlee), Ethan Radtke is an amazing five year old with a HUGE smile and a mischievous look.
Due to multiple health complications experienced by his mother Lisa, Ethan and his twin sister were born at 33 weeks. While his sister was fine, Ethan was immediately placed on a ventilator due to undeveloped lungs and remained on one for approx 96 hours. No additional concerns were immediately identified and after 3 weeks in the NICU he was released. Throughout his first year, Ethan did not meet his development and some physical goals and at 18 months, Ethan was referred to a Neurologist where a Cat Scan (CT) was done. While the CT showed a perfectly normal brain, however based upon symptoms, Ethan was diagnosed with (CP) Cerebral Palsy-Spastic Diplegia. Since the diagnosis, therapies (Speech, Occupational & Physical therapies) have ensued multiple times a week to help with Ethan’s tone and to develop much needed skills. In addition, torturous injections of Botox & Phenol have been given as well; these worked at first but as time progressed, beneficial outcomes were no longer noticed.
Ethan has two amazing parents, Lisa and James, who have earnestly become advocates for their family. Learning the ropes did not come easy at first, as it was soon learned that services and benefits available are slightly different family to family and are based upon the child’s need; disability level and last but not least, the families income basis. Needless to say, they jumped right in to learn all they could about CP and what Ethan needed.
Today, the CP has started to affect Ethan even more negatively. Now that his tone has become much more unmanageable he is slowing down in movement and as a result, he is growing quickly (he gained 3 lbs in less than 1 month). In addition, as he grows and develops mentally he knows that he isn’t the same as his brother and sister which he has vocally shared that he wants “Legs that work”. His goal at this point is to sit on his sister and “get her! He is after all a boy who loves to torment his sister in every sense of the word, if only he could get a hold of her.

Pain has elevated partially due to his growth increase and partially to the overwhelming tone. Upon a recent evaluation at Gillette Children’s Hospital in St. Paul, MN, both of Ethan’s femurs have developed bone twists. Twists develop as growth of the bones occurs however due to the high tone, the muscles cannot stretch with the bones, therefore creating a rubber band effect and twisting the bones. As a result, the use of his crutches and walker has become extremely difficult. With therapies having minimal impact and not seeing needed impact with Botox or oral muscle relaxers such as Baclofan, Lisa and James decided to identify an outside and permanent option to help reduce Ethan’s tone and get him on the road to “new legs that work”.

ADULT (non-embryonic ) Stem Cell treatment: Only done outside of North America, this procedure entails a stem cell collection from Ethan’s hip bone. Cells are then sorted in a laboratory and are reintroduced via a lumbar puncture. Success rates with CP patients have been remarkable and they continue to see children thrive without risky surgeries. While the success rate is high, there are no definite promises but they have witnessed friends of theirs, also brave parents of a child with CP, taking their child to Germany whereby the results were a walking child in one week after treatment along with better use of his hands and attempts to speak. . Unfortunately since the procedure is not recognized in North America, the stem cell treatment is done by a private institution resulting in the denial of any insurance coverage of this $20,000 treatment (this cost includes treatment, hotel & transportation).

Time to help
Together, Lisa and James keep working towards solutions to give Ethan what he needs to overcome his disability; whether it’s purchasing or modifying special needs equipment or fighting for coverage through the insurance company, they will not give up. Ethan too continues to be as strong as his parents as while he’s learned that using crutches and a walker is a tremendous strain, he’s still adamant when he states “No! I do not need a wheel chair! I can walk Just FINE!!

Needless to say, while the Radtke family has been working towards solutions to assist Ethan, funds are needed to make the possibility to walk a reality.

This donation site has been created at the request of friends and family. Please feel free to utilize this information to add or join the “Ethan Deserves to Walk” group. All dollars earned will go directly to these possibilities.

Thank you all for your support and helping a little boy’s dream come true!