Ohio Trip

So it's been a while. Well, we wanted to update you on Ethan's latest. About 2 months ago Ethan's orthopedic doctor suggested that we consider amputating his foot and fusing the knee on his little leg. This way he would have a stub that would go into a permanent prosthesis with a prosthetic knee. He seemed to think this would be the best time to have this done based on his leg being the same length as his big femur would be when fully grown. We of course did not want to loose his little foot. We love that special foot. It was hard to take this news but we knew it was something we had to consider so that is why we flew to Ohio this past weekend for a second opinion with a doctor that came highly recommended to us.

After a 3 hour long appointment we came out a bit disappointed. Dr. Crawford was very nice but after telling us about the 7 options we had with Ethan's condition (most of which we already knew about and some of which he is not even a canidate for), he told us that it was up to us to decide what to do. After he left the room his nurse told us that he never likes to "give his opinion" but rather let the family decide. This was frustrating for us although we did learn some things that we did not know before. We wondered why we had spent all that money to fly out there if he wouldn't even give us his opinion.

As of right now we have decided to not do anything and just let his little leg be. We still need to spend more time in prayer about it and though we feel not qualified to make this serious medical decision, we know that ultimately it is up to God and what He wants for our Ethan. We are instead going to really focus on making his current prosthesis as comfortable as possible. There are some things that can be done and hopefully that will ease his pain and fatigue at the top of his calf.

Thank you all so much for praying for us. Ohio was so beautiful and we really enjoyed all the leaves turning colors on the trees. The boys of course loved staying in the hotel and watching all the cartoon channels on cable that we don't get at home. We love you all and will keep you posted on anything new.
M, S, A & E

Ethan Writes

Some of you wanted to see Ethan's letter that he had to write to apply for the hand bike. So here it is (I typed out what he wrote and these were his words, not ours.) We are so excited! He gets it on July 31st! Check out the invitation below that Roadrunner sent out to all it's employees. We would love it if you could come! There will even be media there!

Dear A.H.A.,
I would like a hand bike because I would never give up. I can't ride a regular bike. It is to hard for me. I also want to ride with my broder (brother) but I can't. When I tried the hand bike I went so fast and it was fun! I would love to have a hand bike!
Ethan de Neve


Subject: Ethan's getting a handcycle

Ethan is getting his handcycle!!!
Thursday, July 31st
2:00pm
RRS San Diego Retail


Hard work really does pay off, and now FEEL GREAT Paying it Forward!!!!

Join Mike as we give Ethan John de Neve his very own handcycle on behalf of the Road Runner Sports Family.
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Be there to see the smiles on Ethan & his Family's Faces as he rides around the parking lot.

This will definitely be a moment you don't want to miss!!!!!




Erin Campbell| Executive Assistant|San Diego\ roadrunnersports.com

Family Traditions

I love these pictures cause my sisters and brothers and I grew up reading the comics at the kitchen table over food and the Sunday colored ones were the most fought over. Well, the same is now true in our house. The boys love eating breakfast Sunday mornings while reading the comics.

We love summer time!

So July is the month when the de Neve's get to play. No teaching jobs, no homeschool and very low stress. Here are some pictures of us on the ferry ride over to Coronado, the boys in our pool out back and our giant water slide that is currently destroying our grass and we don't care. :) I just got back from 4 days with Malina and Anjuli up in Santa Cruz for an absolutely wonderful and relaxing girl's getaway in a perfect bed and breakfast right on the beach. We ate at this yummy taco shop 3 times while we were there!

Ethan's Handbike

Below is a letter we sent in last Friday to Athletes Helping Athletes along with an application, pictures of Ethan and a 2 page, hand written letter from Ethan (very huge for him). Athletes Helping Athletes is a non-profit organization that teams up with companies like Road Runner Sports to raise money for disabled kids who don't have normal function of their legs, to give them grants for hand bikes. With a hand bike the child does not need to use their legs but instead their arms do all the pedaling. A hand bike usually costs anywhere from $1600-$1800. If you have the time please read the letter below.


I am writing this letter to introduce my son Ethan de Neve to you. Ethan was born on February 21, 2001, one hour and 17 minutes after his twin brother,, Andrew, entered the world. They both surprised us by arriving 2 months early but did well and got to go home after 6 weeks in the NICU. Both boys were also born with P.F.F.D. (Proximal Femoral Focal Deficiency); however Andrew has only a mild form of it. One in every 50,000 babies is born with this and no one knows what causes it. Basically one leg is very short, especially the femur and all the bones in that leg are also much smaller than the other leg. This condition, in most cases, also includes a deformity of the hip. Some children are even born with out a hip but thankfully Ethan was born with a hip, it was just completely turned sideways and had no socket to even go into. The foot on his little leg comes to just below his big leg’s knee and he has worn a prosthesis to help him walk since he was a year old. When he was 5 years old he had major hip surgery to straighten his hip but since there is no socket for it to go into it is currently just floating around in that area. After countless hours in therapy he was able to learn to walk again but still gets very tired and cannot walk more than 10 minutes before having to stop because of pain in his hip and pure exhaustion. Ethan is a sweet, funny, energetic and competitive boy who is so determined to do what everyone else thought he would never do. Since he loves to play outside with his brother we have tried converting big wheels, special scooters, and two wheeled bikes but he hasn’t been able to ride any of them. His hip just will not move in that way to pedal and scooters completely tire him out after a few minutes since he is standing and supporting his hip the whole time. He has grown very frustrated (partly because he is trying to keep up with his brother) and we have about given up on trying to do active things together as a family. If we all are biking or running, he cannot join in unless he is being pushed in his special jogging stroller and that is just not much fun for him. Plus, he really needs an outlet to get some good exercise. His upper body has always been extra strong because he has had to compensate for the lack of stability in his lower half. Recently my husband and I had been talking about what we could get him on that he would not have to rely on his legs to move.. The very next day Roadrunner Sport’s catalogue came in the mail with a picture on the front of a boy riding a hand bike. We couldn’t believe it and started researching online to find out as much as we could. The price definitely scared us but we wanted to at least try it out. We could not find one anywhere for him to try out but a couple of weeks later while at Roadrunner Sports shopping for shoes, the boys found one displayed at the front of the store for a fundraiser for AHA. Ethan immediately climbed on it and tried to start riding it around the store. Because there was not much room in the store he of course could not move it but a few feet.. Thankfully, a nice employee asked if we wanted to try it out in the parking lot. We were so excited! They took it out there and Ethan climbed on and took off. At first, I started walking next to him, then I was jogging, and suddenly I was sprinting to try to keep up with him. I have never seen such a big smile on my son’s face, nor have I ever seen him make himself move that fast on wheels! I was actually getting choked up as ran to keep up with him. It was definitely a moment I will never forget. Ever since that day Ethan has been talking non -stop about getting a hand bike. He even has started telling everyone he runs into about it. We have told him all along that they are pretty expensive and we are trying to find a way to afford one. Then his prosthetist informed us about your grant program and told us we should look into it.. After reading all about your program and what you are able to do for so many great kids, we are honored that you would take the time to hear about our son. For Ethan to have a hand bike would be an amazing thing. Tonight he came in and said, “You know Momma, I am actually glad I have a little leg because if I had two long legs I would have to ride a regular bike and never get to maybe have a hand bike. I am glad God made me be the one to have a little leg!” Tears came to my eyes. He has never before said that he was thankful for his disability and to hear him take that perspective on his situation was awesome. We would love for him to be considered for this program. Thank you for letting us tell his story. Sincerely, Sara and Michael de Neve

We got a phone call yesterday, 3 days after we mailed the letter to say that they would be making a hand bike for Ethan at completely no cost to us!! They usually take 4 weeks to make since they are custom built. Ethan has been saying that if he ever got one he would want it to be blue. I asked them if they got to choose the color and he said, "No, we only make them in midnight blue." :) Ethan is so completely excited. When it is ready he gets to go down to Road Runner so they can present it to him in front of all the employees there. We told Andrew that we are going to get him a brand new red two wheeler bike of his own so he can try to keep up with his brother. God is so good!
P.S. The picture up top is what it will probably look like.

Hello Blog World

Wow, I'm officially a blogger. Is that how you say it? So here we are. Look for more to come but here is a picture of us on our Holland trip in April.