A letter to all of our friends,
It was a beautiful spring morning, April 10, 1995, when Jessica Rae Kelley blessed us and all the people who were to know her, with her birth. She was a perfect baby, the apple of her Daddy's eye and the joyful gift of her mother. At the time, Kristina and I were managing a beautiful camping/swimming park and life was good! We bundled our baby in our arms and took her home.
We had just had a warm Spring rain and as we drove into the
Park, a rainbow illuminated the sky over Jessica's
new home. Little did we realize the awesome significance of that sign from the
heavens; Jessica was to be a special child. By he end of summer, our life at
the park had changed. The old owner, for whom we worked, had some problems and
was, forced to sell. The new owners stepped in, ready to bring in their own
people and establish their own ideas; and so, the place where I had worked since
high school and through college; the place that was to be Jessica's, Kristina's
and my home was to change and I was fired.
We gathered our lives together and headed to Akron to pursue a music project. Life was difficult at that time but Jessica was the glue that held everything together. Her smile and laughter echoed through the house. She was curious about everything and was a fast crawler who kept us on our toes. Up and down the steps, she would go, laughing and giggling and chasing Kaya, her loving Great Dane. Pretty, doggie, da-da, Ki-ya, was her vocabulary. Nothing could be kept out of her mouth, she would eat anything, including Kaya's toys. She was a beautiful, typical little girl; however, that was all about to change
A little over a year after we arrived in Akron, Jessica had a common childhood illness with a runny nose and fever. After she got better, we began to notice some changes. She was no longer pulling herself up and walking around the coffee table. Her vocabulary seemed to diminish and she was having troubles using her hands and fingers when she fed herself. This would bother her and she would often be upset and frustrated with her efforts. There were little tremors and gasps for breath but all of these things happened so slowly, that we barely noticed or we made excuses for them. Then, upon the insistence of her Grandma, we took her to an Akron specialist for an exam. He thought she might have Juvenile Epilepsy and he treated her for that, but little progress was made. Finally, we took her to Rainbow Babies and Children's Hospital in Cleveland and on my birthday in 1996, the correct diagnosis was made.
Our little girl had Rett Syndrome.
Our lives came crashing to the ground. The diagnosis put us
in shock but the prognosis was awful. Things were going to get worse.. Kristina
and I cried the whole way home,which soon became days, then weeks. How could
this happen to our innocent little girl, so beautiful and so full of life? Why
did this happen to us---the odds are between 1:15,000 to 1:23,000 female births---why
did it choose to come into our lives? We have struggled with these questions
over and over.and even today.
we don't have the answers but, we can assure you of one thing--
Jessica is a joy and a delight that brings happiness to all of us.
Before we go any further, let me tell you what Rett Syndrome is.
It is a neurological disorder(or pervasive development disorder),seen almost exclusively in little girls. The child with RS usually shows an early period of apparently normal development until 6-18 months. A period of temporary stagnation or regression follows during which the child loses communication skills and purposeful use of her hands and usually legs and arms too. Other problems(too many to list them all) include seizures, sometimes severe and even fatal. Disorganized breathing patterns and or heart rates. "Apraxia", the inability to program the body to perform motor movements, is the most fundamental and severely handicapping aspect of RS. It can interfere with every body movement, including eye gaze, speech, swallowing, balance. More problems such as internal functions, body temperature, general growth, sensory problems including "overload" when there is too much going on around her. The list goes on and on, making it difficult for the girl with RS to do what she wants without a lot of help and complete dependency. Our little girl lost her ability to feed herself, to drink her "joose", to play with her toys, to crawl, to talk! It was extra hard when she began to realize something was wrong too. She was so puzzled and sad because she couldn't do what she did the week before. We all watched as her abilities were taken away by Retts, little by little. Our sweet little girl. All we could do is hang onto each other with a lot of love and let Retts run its course. Due to apraxia and lack of verbal and motor skills, it is difficult to test intelligence, but we are constantly amazed at what Jessica understands. The unique ways in which she communicates assures us she has many thoughts, ideas and dreams, just no way to tell them to us.
Jessica had a wonderful 14th birthday, and party. She is quite the young lady. We have been working hard on so many things; how to control our body and balance as well as becoming more comfortable with her disabilities. Her health has been up and down, but presently she is doing just great. She prefers the potty, when we get her there on time. She stands well in a stander but can not walk. She had spinal surgery and full rods in 07 and did very well. Her head and eye control is great. She loves reading books with dad, and having creative playtime with mom. Heavily into Blues Dora The Explorer, Bear and the big blue house,Veggi-tales,Sesame Street, and - of course, Winnie-the-Pooh. She adores other children and wants to share laughter with them. She delights in having visitors and giggles when they arrive. She loves to take walks and swim with her mommy and daddy. Her eyes sparkle with delight when she sees something new. She laughs a lot(Mom&Dad can act pretty goofy!). She is very vocal and expressive. When in a good mood she sings little songs, all of her own. She had regularly attended the Metzenbaum School for Special Needs Children. But we just moved her to the Happy Days school for Sp.needs because it is closer to home. What an amazing school. They have been so kind and so caring which means more then words can say to the three of us. And they are so positive and work so hard with Jessica's needs. They are very creative and have fantastic facilities. She even goes swimming once a week! Its good people like this who make our world still go around without breaking.(Thank you!). Jessica smiles when the school bus arrives and happily takes her seat. One afternoon with Jessica, and you know that she understands the world around her and she finds it wonderfully exciting. If only we could understand all of her noises----she tries to put the words together but we are frequently the handicapped ones who don't understand.
Don't misunderstand, every day with Jessica is not "joy" for the three of us. There are days when something hurts, and she is unable to tell us where it hurts; she cries and cries. Then, there are the seizures where her eyes stare, her tongue rolls, and her breathing is in gasps or stops for long moments. We have breathed into her mouth many times frightened that she was going to die right there in front of us. Miraculously, she starts to breath and often, when she starts to breathe again, she looks at us and giggles. To control her seizures and breathing episodes,she must be on medication which have many bad side effects and makes her a little sleepy and grouchy sometimes. Rett children are chronically constipated and that causes unbelievable problems; even trips to the doctor. Her little hands and feet curl, and must have massage therapy daily. A new problem we are dealing with is "reflux", due to medication and stomach irritation, acids come back up from the stomach into the esophagus causing pains, much worse then adult heartburn. She has pain/emotional "episodes" every 3 weeks or so that last for 3 or 4 days and medication helps her get through those times. These episodes are very, very difficult for Jess and the whole family. She is having a little swallowing difficulty but still eats and drinks by mouth and loves it. Unfortunately it is common for Rett girls to eventually lose this ability too and have to be tube fed. But we are always working on preventing or at least delaying the many problems like this. Jessica is 24 hour care but we love her so much that it takes up a good part of our lives. She is the sweetest angel.-The toughest part of all has to be not knowing how much time we have with Jess. Some Rett girls are lucky and live into later years(20s and 30s)but many leave us at Jessica's age or into their teens due to any number of complications. As we put her to bed each night we only hold her that much more tightly, stroke her hair or hand for just a little longer and a thousand "I love you's" and kisses. The reality of Jessica's future makes her laughter and happiness the greatest gift the world has for us... She is my best friend...
Our visits to the hospital and the children's wards awakened us to a part of life that we were never aware existed. Our hearts ached to see the hundreds of children in need and their parents who cry for them. We wanted to reach out and touch each of them,
but our pain was so deep that there was little we could do at the time
Just when our lives were at the lowest: our baby had been diagnosed with Retts, the music project was at a standstill, we were struggling with our own inadequacies, and money was running out, an exciting opportunity was offered to us. The Ledges was for sale again. It took a lot of hard work, a supportive family who came to our aid and many prayers, but we were able to buy it. And so, in the Winter of 1997, we came home! The park(our musical campground)has given us new hope---hope that we can one day be of some help to the children and parents who are in such need. In ten years we have raised over $50,000 and will continue to make much, much more. Our future plan is to put on music festivals with 100% going to important childrens causes. The government is so tied in red tape that their help is slow and inadequate. Rett Syndrome is so new that little research has been done. Wonderful doctors have been making progress and a gene has been isolated just recently!(see Rett org. site below). Still, there is so much more needed with no treatments or help on the horizon for a cure. It is our dream to help, as we are able, not only Rett children, but all Special Children. Many music artists will donate their time to raise money for these children and your contributions to any of their causes, can help. When we get this park out of debt, these children will be our number one priority. It is our gift to Jessica; it is our goal in life! There is NO greater cause then that of sick children. Children who never get a fair shot at life, often in pain or even dying. This is the real world folks. Please don't turn your heads because everything from money and time to love,understanding or a true caring touch,smile,act, even reading this website and wanting to learn,
MAKES A DIFFERENCE!
'All the darkness in the world cannot hide the light of one candle'-Nelson Mandela
There was no rainbow over the house when we returned to the Ledges in the Winter of 1997; instead, the rainbow was in our hearts, in our dreams, and in the memory of that first day when we brought Jessica home---but this time it is for always. Jessica has been that rainbow for us---the beautiful sign after a storm that reassures us that life is good. Jessica is our symbol of love and happiness and trust. One looks into her sparkling brown eyes reassures us that everything can be okay. She is pure love! with so many odds against her and hurdles to cross but yet she shines brighter then the brightest star. She can teach you more about yourself and the world around you, then you ever dreamed. ..Come and visit with her and you will share that happiness that is so unique to her and so contagious to everyone.
Thanks for being so interested. This is still very difficult for us to talk and write about; but, as Jerry Garcia sings:
"We will get by, we will survive!"
Children are our gifts and mean everything. Hold them tightly and teach them well!
Love to you all,
Evan, Kristina and Jessica Rae
Check out these new, unbelievable photos - bringing you very
close to a special day with Jessica.
School picture! 2003(7yrs.8mo.)
Jessica's new sister 2003!!!
Click here for photos
HERES MORE PHOTOS 2003
Above Jess at Christmas. Alia "sissy" and Jess below 2005.
OH DO I NEED TO UPDATE!!!
2006/07 PHOTOS CLICK HERE!
...P.S. If you would like to learn more about Rett Syndrome or make a contribution, here is the address:
(IRSF)International Rett Syndrome Foundation
This is another great site for Rett info and contacts
This is a very special Rett birthday calendar being constructed
by a Rett family in New Zealand. It is just coming along beautifully!(Jess is
April10, go see!)Make sure you click on the link in the top right of each month-list
that says "Pix,E-mail&websites". This tales you to a list of thumbnails
for the month. .Seeing all the beutiful pictures of these girls together really
puts things in perspective and opens a window for you to get an idea on how
many people and families are effected even though its just a small fraction
of the whole. Its just beautiful! And there are many more girls to be added,
and an endless list that dont even know about it. (Get your girls on there Rett
folks!) this is just the begining.What beautiful girls! What a beautiful site.Thank
Rett angels birthday calender
We are proud to have Julia Roberts as a new voice for Rett Syndrome. She has recently made a touching and informative docu/film for Discovery Health channel entitled Silent Angels. It has aired around the world and will replay again so watch for it! You can also order a copy through IRSA above. Thank you so much Julia.
We look foreword to your future work on screen and with our girls.
*We are terribly saddened to announce the sudden passing of Abigail Brodsky(pictured above). Julia is now working extra hard to do her part.Look for many interviews and replays of Silent Angels. Abigail was similar to Jessica in so many ways, mainly her sweetness. She will be missed by us all.
*Allman Brothers Limited Rett Benefit CD*
Yes, Jessica was named after the Allman Brothers song, which
has become coincidental because the Allman's have donated a lot of time and
money to the Rett Syndrome Foundation Along with a few other bands such as Pearl
Jam, who donated $25,000 from their last tour to Retts.
Allman Brothers Limited Rett Benefit CD is a great buy and a great gift at the same time you can help out Jessica and other girls with Rett Syndrome, as well as get some great music from the Bro's ! And ALL the $ goes to Retts,100%- Thanks guys!
Simply call the 800 number above at the International Rett Syndrome Association for details, or send check or money order to the address above for 20 dollars to the IRSA and list Allman Brothers CD in the memo an of course don't forget .
A TOCHING STORY(Click here)
We are always updating and adding pictures and plan to add more
links to Rett related events and stuff, so pop on in from time to time and see
what were up to...It is our hope
that you come back to this site often for insight and inspiration!
Enter Old Photo Album