Space and Hope for Simon!

FROM MATT DAVIS, FRIEND OF SIMON:

I want to take a moment to introduce you to an amazing family and an incredbile 10 year old who, along with his loving family, is fighting the challanges that come along with being born with a Chromosome disorder.  

We have all seen the "Cold Water Challenge" video's put on social media ,where people either jump in cold water or donate to their favorite charity.  I am suggesting we create a "Give Space For Simon Challenge."  

I challenge each of you to donate what you can, take a picture of it (omit the amount if you want), post it on your social media site of choice and urge people to share so it will go viral.  Let's do something worthwhile for great people who need help versus jumping in water to avoid making a charitable donation.  For the love of Simon, won't you please help?


Simon Peters of Marshall Michigan,  A blessing beyond words:


Simon was born in 2004 with a rare chromosome disorder called Pallister-Killian Syndrome. Like any other child, Simon is deserving of the love and the care that will help him fulfill his potential, but unfortunately the needs involved are beyond what we can afford. We must put our pride aside and ask for help to cover a portion of the expense of the much needed addition to our house and in the future, potentially a handicapped accessible van for Simon. We've put together this note to help potential funders, like you, learn more about the special needs Simon has and about how PKS effects him and our family.  We are also hoping to appeal to individuals who would be willing to help us find a financial path to give Simon and us the tools we need to care for him in the best way possible. If there is anything you can do to help, we sincerely and deeply thank you. Jim, Gretchen, Alex, Emily, Maddy, Natalie, and Simon Peters. Simon's Web Page

THE NEED FOR SPACE FOR SIMON:

Simon is well loved by all of us and our large extended family.  Keeping Simon at home with us is so important for him and us, but we don't offer an ideal home for Simon.  Simon shares an upstairs room with his little sister. Not only is it becoming harder to get him upstairs for sleeping, the only tub/shower we have is upstairs and bathing him is becoming very difficult due to the lifting of him in and out. Lifting Simon takes a good deal of muscle and finesse due to his low tone, dead weight and length. Additionally, there is no room in his bedroom or the living areas for any therapy equipment or accessible equipment. His wheelchair cannot even come into the house so he is lifted in and out of it in the garage. Once inside there is no room for him to be an active part of our family at dinner. He spends much of his time on the floor or in a small seat in the living room. He has a caregiver, who works with him in a small corner of the living room. We are currently working with the state to begin an addition for Simon behind our garage by extending the back of our house to increase the size of the kitchen and dining room and add an accessible bedroom and bathroom on for Simon. Furthermore, we need to have all the doors widened and perhaps even, a front porch with a ramp on to accommodate bringing the wheelchair inside and allow Simon to enjoy the outdoors. The state is willing to cover the cost of the bedroom and bathroom, but finishing the kitchen (needed due to the layout/architecture of our house), wheelchair accessible flooring throughout the main floor and covered outdoor space won't be considered. After the home changes have been addressed, we will tackle the issue of a handicapped accessible van. Many times Simon is left at home or family plans are altered due to the difficulty in transporting him. Having these changes will benefit two-fold. First, to ease in giving care to Simon and second, to make Simon more inclusive in our family! Both are terribly important for his health and happiness. 

THE PETERS FAMILY:  

Our Family Jim and I are almost lifelong residents of Marshall. We both went through the MPS system and have been married nearly 25 years. Simon is our fifth (and last) child. Simon was diagnosed prenatally and I felt the world had crashed down around us. Almost 10 years later, he brings us much love and joy amidst the struggles he has. Simon has an older brother and three older sisters.

WHAT IS PKS?

Pallister-Killian Syndrome (PKS) is a chromosome disorder resulting from a double duplication of the short arm of chromosome 12 (12p). It occurs randomly and for no known reason. It is a mosaic syndrome. Right now, there are fewer than 300 known cases in the world! In Michigan, I know of 6 cases. Although symptoms may vary, Simon is affected by low muscle tone, hearing and vision impairments, seizures, scoliosis, developmental delay and severe cognitive impairment. Simon will almost certainly never walk, talk, communicate or be able to care for himself in the slightest. As he grown, heart problems and contractures may develop. For more information on PKS, please visit What is PKS? and click on medical information. There are many links to excellent information. Simon is nine years old and functions at a 3-4 month level. He is unable to sit, crawl, bear weight, feed himself and requires total care. Although healthy despite his many issues, his seizures cause him the greatest risk and are unresponsive to medication so far. We visit his doctors in Ann Arbor 8-10 times a year. He sees eight specialists there. From the time he was born, Simon has been in therapy, through Early Intervention and now his school. We are also working on getting him additional therapies outside of school. He responds well to lights and we hope to outfit his new room with sensory equipment and lights, as well as swings and other things to bring him joy and help him physically. Simon does occupational, physical, speech, and vision therapy. Right now, with the house the way it is, he can do very little at home due to lack of room. Simon does not reach for toys or play with a toy given to him. Again, this is due to sensory issues and through intense therapy can be improved upon. Simon attends school every day at Doris Klaussen Developmental Center and they are instrumental to his development. 

Donations

  • Anonymous 
    • $20 
    • 69 mos
  • Anonymous 
    • $20 
    • 70 mos
  • Anonymous 
    • $20 
    • 71 mos
  • Anonymous 
    • $20 
    • 72 mos
  • Anonymous 
    • $20 
    • 73 mos
See all

Organizer

Matt Davis 
Organizer
Marshall, MI
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