How to donate

Make tax-deductible checks payable to: Help Hope Live, with "In honor of Cash Burnaman" in the memo section

Mail to: Help Hope Live, 150 N. Radnor Chester Road, Suite F-120, Radnor, PA 19087

For credit card donations, please call 800-642-8399 or visit helphopelive.org (enter Cash Burnaman into the Find a Patient field.)
__________________________________________________________________________


Friday, October 29, 2010

Hope

The phone call with the woman who just got back from India with her son really gives me hope. I am still feeling buoyed by it two days later. The fact that she sees changes, and she reported changes in another kid with autism who was there at the same time, is remarkable to me, and shows me that we are doing the right thing by taking this chance. Josh and I have been focused on potential physical changes - improving his low muscle tone and the changes that might cascade from that - but if we see changes in his cognition too, that would just be whipped cream on top.

And at this point, I have to say that even if we don't see any changes at all, I still think we are doing the right thing. I see lots of reasons to hope, and I think our decision to pursue stem cell therapy is a rational and reasonable one. Granted, a rational and reasonable adventure!

Wednesday, October 27, 2010

Zowie

Josh spoke today to a woman who just returned from taking her autistic son to India - she reported CHANGES IN COGNITION!!

Donate

A reminder: we need money to take Cash to India! Please donate:https://www.wepay.com/public/view/151686

Football

Here is a picture of Cash and Josh playing football when Cash was three months old. You'll notice that Cash IS the football.

Tuesday, October 26, 2010

It's now

I think we are taking Cash to India for stem cell treatment at the right time - he's working so hard on walking these days and it just feels like a little help will make a big difference. His steps are still hesitant and he usually falls into your arms at the end of about 5-9 steps, but you can see that he is starting to believe that this is something he wants to do. And he's standing by himself for a long time now, and signing at the same time. I am still amazed to see his little body on his own two feet standing all by himself in the world.

Cash's eye contact also seems to be improving lately, and he is into the letter O. Have I mentioned that he has a very individual, but very strong, sense of humor? He generally thinks peekaboo is funny, and being chased, and people cleaning or doing repetitive movements (which can be a little weird when he starts chortling at the busboys at restaurants). And he is ticklish, which I enjoy!

I just think he is working on so much now, and stem cells are going to be an extra push...

Friday, October 22, 2010

Lots of good news

First of all, a big thanks to David, Hank at the post office, Shauna, Aunt Sue, Sam and his family, and Grace for their gifts in support of Cash's trip! I love you all!

Second, we met with Leah yesterday and I am even more convinced that stem cells are going to help Cash. Her descriptions of her personal changes and the changes she saw in those around her are remarkable.

Third, I visited my friend Ariane's blog today and saw potentially great news. Ariane's daughter is autistic and they have done two rounds of stem cell therapy in Panama with her - and now they seem to have evidence that Emma's brain scans have improved! Very exciting for Emma, and maybe another reason for us to be hopeful.

Fourth, Shelley Popish has agreed to oversee the silent auction at our event on November 14th. I am incredibly grateful and feel like a huge weight has been lifted off me. Woo Shelley!

It's really kind of a nice Friday, huh?

Thursday, October 21, 2010

Busy

We're so busy right now - both trying to fundraise/plan the November 14th event and trying to plan the actual trip.

We had lunch with Leah Potts (who has been to Dr. Schroff's clinic in India three times) today and talking to her made me that much more sure we're doing the right thing. I think we'll see positive progress in India and that makes me very excited and happy. The whole stem cell process is amazing.

We're taking donations for the silent auction now - woo woo!

Cash was also very cute at lunch - he's been particularly charming lately. And I saw about 8 independent steps this afternoon!

Wednesday, October 20, 2010

Autism

We spoke with Dr. Schroff in India this morning - the most interesting thing she said, I think, was that she is interested in working with Cash's autism as well as his physical issues....hmm! I hadn't really allowed myself to hope for improvements in that area!

Logo from Paul and Katie!

Tuesday, October 19, 2010

Another way

Here's another way to donate:

https://www.wepay.com/donate/add/151686

Money money money

Here's the thing - I am totally excited about the trip to India and am totally hopeful about Cash's chances for improvement. But I hate the fundraising!! We have to raise $50,000-100,000, and so we MUST put ourselves out there and ask for money. So here goes:

If you are interested in supporting our efforts to help Cash reach his full potential by receiving stem cell treatment, please make a donation to the Change for Cash fund at US Bank (phone number 970-925-3959) or by writing a check to Cash Burnaman, Josh Burnaman, or Stephanie Krolick with "Change for Cash" in the memo line. All funds will go to support Cash's therapy.

Thank you, thank you, thank you.

Monday, October 18, 2010

Weekend

Cash and I had a very nice weekend - cleaning out closets and watching the Steelers win (of course Cash is a football fan). He did have a tumble down the stairs though - not a bad one, but afterwards, he tried to do the sign for "hurts" (pointer fingers touching) - first time I've seen that sign! It wasn't done quite right, but I liked the effort. He's also working on the sign for "bunny" right now - Little Bunny Foo Foo being in Cash's Weekly Top 40.

Cash is doing two other new things within the last few weeks that I think are great. When you ask for a kiss, he leans in and sort of bonks you with his head. And, he's been giving Froggy and Corduroy snacks and drinks, which he thinks is very funny. Both good steps forward in terms of engagement!

Friday, October 15, 2010

Cash's first independent steps

video

First gift

We just got our first gift in support of the trip to India! It is from a coworker of mine, and I cried when I got it. I am so touched by his and his wife's outstanding generosity and thoughtfulness - what an amazing start to this journey!

Thursday, October 14, 2010

Our little guy and India

Our son Cash was born July 30, 2005 with an un-named chromosomal rearrangement on his X chromosome. He is now 5, and working to learn to walk and communicate. He does not talk, but he uses sign language, and we saw his first real independent steps just a few weeks ago. He's a charming little person - sweet and lovable.

Cash goes to preschool and he takes physical, occupational, and speech therapy. We love Cash as he is, but we want him to have every opportunity to reach his potential.

And to that end, Josh and I have decided to take Cash to India for stem cell treatment this winter!

I got excited about this idea in August after speaking with Amanda Boxtel. Amanda has visited Dr. Geeta Schroff in New Delhi numerous times over the last few years. Since receiving stem cells, Amanda has increased sensation and bladder control. We believe stem cell therapy will help Cash because he has hypotonia (low muscle tone). Because Dr. Schroff’s experience has shown that stem cells have helped improve the condition of paralyzed muscles, we believe that they will help improve Cash’s muscle tone. Though Cash has other issues such as asthma and developmental delays which may benefit from stem cell treatment, we are focused on a reduction of the hypotonia as a reasonable treatment outcome.

Treatment consists of injections of stem cells, along with intense physical therapy, all under the supervision of a doctor who has been practicing this therapy for 10 years without negative side effects. Cash will need to be in India for two months for the initial treatment with additional future treatments planned. The total cost is likely to exceed $100,000. More on that later -

Our goal is to improve Cash’s quality of life. We are not looking for a miracle cure – Cash is who he is – but we would like to make his life better. When Cash’s muscle tone improves, we expect improvements in his ability to walk, potty-train, and perhaps communicate (since core stability is crucial to both sign language and speaking).

Cash is a fabulous person – and he deserves a chance to reach his full potential. India, here we come!