Saturday, June 14, 2008

A bed for Alyssa

This was posted at a message board by my very good friend, Lesley. She is a GREAT friend to Jessica... she's trying to raise money for... well, just read on and you'll understand!

Even if you can't do anything money-wise, pass the word on if you can! Lets get Alyssa a bed!!!


Attached is an article regarding Jessica and her daughter. I just got a letter from her church who is donating $3500 towards the cause.

Any donations can be sent to my Paypal and I will make sure they get put into the fund. Tax write-off too!

Or my address is:
1823 Raymond Ave
Ramona, CA 92065

7 years ago a baby girl was born to my best friend, Jessica. The moment she was born the doctors took her away from her parents because something just wasn't right with her. Undiagnosed in utero, a complication was found at birth. She was sent within hours to Children's Hospital and Jessica was left with only Polaroids to comfort her. The next day, when finally discharged, Jessica left her hospital and went straight to Children's. Upon arrival she was met by her (then) husband who informed her that their daughter was being tested for a chromosomal abnormality. At 2 days old, after being given her diagnosis and prognosis, the family was urged to sign a DNR and leave her there, that their daughter would not make it a week. And if by some miracle she does survive, she will be 'deaf, blind, and a vegetable'. She will have no quality of life.

My friend and her husband decided they would not leave their baby at the hospital so they took her. The hospital had given up, but they surely wouldn't.

7 years, 14 surgery's and millions of prayers later, my friends daughter, Alyssa, thrives. You see, Alyssa was born with a semi rare chromosomal abnormality called Trisomy 18 (aka Edwards Syndrome). Rarely does a Trisomy 18 child live to see their 1st birthday let alone their 7th. More common in girls, there are only a few in San Diego that have made it into their childhood years. Alyssa is one of them.

This little girl wins the hearts of all who meet her. Her bright smile and laughter proves to the world that she is a happy, thriving, UN-vegetable like little girl. The doctors are amazed and say Alyssa is writing her own book. Each day of life is a blessing and a miracle.

Since Alyssa's diagnosis is rare and considered incompatible with life, my friend has to jump through hoops in order to receive services. Alyssa requires full time nursing, a service that Jessica herself has had to fulfill. Alyssa eats through a G-tube and has to ride in specialized wheelchair. She cannot crawl nor walk but she is able to get around by scooting and rolling and has just learned to sit unsupported. While her sight and hearing aren't perfect, she is definitely able to see, hear and respond to her surroundings She cannot talk but she can laugh and make herself known. She can cry and show her frustrations. She is not a vegetable.

As Alyssa grows, so do her needs. Her mom has been able to provide Alyssa with everything a seven year old little girl with special needs could ever need. However, there is one item that is becoming a great concern for Jessica. Alyssa's bed. Alyssa has been sleeping in a crib for 7 years. She can now sit up and there is the constant fear of her falling out of her bed. She has also outgrown her crib. Alyssa qualifies for a hospital bed, but that would be insufficient to her needs. She needs a bed she cannot get stuck in the rails and a bed she cannot roll out of. Neither of which a hospital bed can provide. Jessica also has to pick up her 30 pound little girl everyday and is straining her back, arms and neck by doing so. A bed with a lift would minimize that problem. Pretty soon Alyssa won't be able to fit in her bed at all and the only solution would be the floor or an oversized play pen. A seven year old should not have to sleep in those conditions.

I am writing this article in hopes to fulfill Alyssa's next need. A bed. After hours of researching a bed that will fulfill Alyssa's needs, Jessica found the perfect solution. A SleepSafe Bed. Instead of rails it has a dual see through panes. It has a electric lift so Jessica won't strain her back. It has high sides that fold down for easy access. The bed that has all the proper and necessary needs for Alyssa will cost Jessica upwards of $10,000. As a single mom, it's an impossible expense. A hardship for most, next to impossible for her. If you find it in your hearts to help out my best friend please contact me at 760-310-3198 or send any donations to "Lesley LaFuze, To the Benefit of Alyssa Keen" at 1823 Raymond Avenue, Ramona CA 92065.

My paypal is: lesley1979@cox.net
Who's with me on this one? Come on! Let's spread the word! Jessica is such a wonderful, loyal, loving mom who is doing this all on her own. What a loving gesture to help her out and give her what Alyssa needs so badly.