Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Saturday, December 11, 2010

Memo To: Bill Gates Re: PWS Throw Away Children

It is the holiday season and once again another child diagnosed with PWS is up for adoption.




This is Lizette. She is a one-year-old and located in San Bernardino, CA. Her reference number is 498488.

For more info on Lizette: Visit: http://hss.co.san-bernardino.ca.us/

From the agency: She is a friendly social baby who loves to cuddle, and will raise her arms to be held. She smiles easily, and enjoys interaction. Lizette was born premature, was diagnosed with "failure to thrive" and has a g-tube placement. However, she is doing well with feeding and her caregiver will request removal of the g-tube at her next GI visit in February 2010. Lizette is also diagnosed with Prader Willi Syndrome. PWS typically causes low muscle tone, short stature and if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that can lead to excessive eating and life threatening obesity. Lizette has begun walking with the aid of a push toy. Lizette is delayed in speech, and is scheduled to begin speech therapy. Lizette will need a loving adoptive family who can care for her medical needs.

This is the second child in two months who has been communicated to the PWS community that they are up for adoption.  See my post on Nov 15 regarding Baby Luke called: Throw Away Children.

As I mentioned, children with PWS are at high risk for adoption due to the complexity of medical issues (g-tubes, and scoliosis) and of course because of the insatiable appetites and behavioral difficulties.

Since it is the holiday season I am hopeful.

I have heard that Bill Gates has joined with several billionaires from around the country to pool their resources and "give back" to the world. I cannot think of a better way to give back than to offer these "thrown away children" a home.

So, since this is the Internet, and you never know...........I am asking that if anyone knows this man, or how to contact  him......please forward this memo to him. Or if by some miracle, he happens to read my blog (yeah right!) please read below:

MEMO

TO: Bill Gates

RE: PWS Throw Away Children

FROM: Lisa Peters

Prader Willi Syndrome is a bizarre and life threatening disease that effects 1 in 20,000 children. Infants diagnosed with this syndrome are often put up for adoption since care for these children requires intense personal sacrifice from caregivers.

PWS causes children to develop an insatiable appetite, and if left unsupervised these children will eat themselves to death. There are also a host of other medical complexities that accompany PWS, speech and motor difficulties due to low muscle tone, scoliosis, lack of pain sensation, poor temperature control, seizure potential, hypothyroidism, eye problems, breathing difficulties, and many other serious conditions. Many children born with PWS, require g-tubes for feeding in infancy.  Individuals diagnosed with PWS will require 24 hour care/supervision for the rest of their lives.

If you would be willing to fund a program to develop a suitable home to care for these individuals, I would be willing to run it and care for them all.

The home could be designed specifically for the needs of children diagnosed with PWS, complete with locked food areas, plenty of helpful staff and behavioral specialists and of course exercise rooms. Since individuals with PWS enjoy caring for pets, we could also adopt plenty of pets for care taking.

The home of course would be beautiful with plenty of gardens and walking areas.
We could call this home:  People are Worth Saving Estate. (PWS Estate)

Mr. Gates, I can not think of a more beneficial program than one that proposes simply to save and love our children.

If you are interested, please contact me.

Many thanks for your consideration,
Lisa Peters

(Oh well, it's a nice dream anyway)

5 comments:

Terry Guinn said...

WOW! What an awesome idea. You might want to submit this idea to other sources for consideration, including PWSAUSA who might have some ideas for funding.

If Mr. Gates is wise, he is using Google Alerts to scope out the mention of his name on the internet, and will see your post.

Adelaide Dupont said...

A lot of Microsoftians - up to and including the ex-Chief Software Architect - use Microsoft products. If there's a feeder connected with the search engine Bing, Gates might be onto it.

There are sources like Reddit and Digg which pass these things on. And there is a great place called care2 and another called change.org. The third sector is alive and well.

I have a feeling the Gates Foundation might be connected with plastic tubing.

(I remember writing a letter to Gates when he wrote the book Business @ the speed of light and The road ahead).

Remember: one of your very best resources is citizen journalism and especially of the hyperlocal kind. Therefore an Examiner.com column might be a good choice.

In the last two years Gates has founded a company called bgC3. One of the three functions is to "create computer software to alleviate poverty".

The Gates Notes: check "What I'm thinking about" and "What I'm Learning

Adelaide Dupont said...

Oh, and Gates is especially interested in minimising the number and percentage of children who die before they are 5 years old.

And the people who are responsible for Technology Education Design (TED) might know Gates and the other billionaires. I remember there was something about them on Scribd.

The People are Worth Saving is such a worthy project, especially if it could be replicated!

Lisa said...

Adelaide, thanks for the brilliant info..I am going to check it all out. There must be a way to reach this man. I think your idea to develop more of these "estates" is an even better idea.

Adelaide Dupont said...

An easy way to reach Gates is through Twitter.

Bill Gates on Twitter

You might first have to work on some organisations. (There is a long list!)

"Please come to Boston," Mr Gates!

And we know the problems when there is only one of a "great good place". I am thinking here of intentional communities like L'Arche and also the Down Home Ranch.

I know he follows 61 people and has more than a million but less than two million followers.

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