Help My Family, and All Rett Girls Find Some Hope
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<3 Please, help contribute to our causes. . .
Help Rett girls by helping us raise a $25,000 donation to the Rett Syndrome Research Trust.
and
Help my family raise funds to go on a vacation where we can take some time away to heal
I'm asking you to please, in whatever small way you can, help us in the much-needed support of other Rett Girls by contributing to our goal of raising a $25,000 donation to the Rett Syndrome Research Trust, in Memory of Mary and in hope for a cure
And please help my family realize the dream of a vacation (we could otherwise not afford) somewhere we can reconnect - somewhere we can make memories. . . somewhere Mary would have loved.
I thought about writing this several times but always felt too awkward about asking for donations and was unsure of what to say. But, for the sake of my family, I’m putting aside my pride and asking for your help. The reason why I'm asking for help to fund our vacation is that I believe getting away would be a great way for all of us to heal after having lost our sister, but in order to do so, we first need your help. You see we don’t have the extra money to pay for all of us to getaway. We’ve tried saving but additional expenses always seem to come up. Like my father fracturing two vertebrae and having emergency gallbladder surgery, my mom’s eye surgeries, funeral expenses, multiple hospital bills and my college debt. We haven’t been able to save; even with all of us trying to pitch in.
It’s expensive for a big family to all go away together. You see, I come from a family of 9 which, through the years has grown into 11 - yea there are a lot of us. To start, there’s my Mom and Dad, me (Julia), James & John (the twins), Peter and Danielle. Then there’s some, unconventional though it may be who we’ve adopted along the way. Family not by blood, but a family nonetheless Kyle, my loving boyfriend, Dan (James’ long term boyfriend and hopefully one day fiancé *fingers crossed*), Nikki, Peter’s amazing girlfriend, and Ryan their beautiful 1 year old son. We used to be larger, but there are those whom we’ve lost - our second mom, Grandma Shutt, our 2 year old sister, Allison (Dec. 12th, 1997 - Aug.4th 1999) and. . . well. . . I guess, I should start at the beginning; the real reason why we need the time away to heal.
My sister, Mary was born with a terminal disease called Rett Syndrome for which there is no cure. Rett’s is a rare, genetic neurodevelopmental disorder caused by a defect in the X-chromosome. This means that girls are born severely disabled and with a myriad of symptoms including seizures, difficulty walking and loss of purposeful hand movement. Each girl differs slightly from the others in terms of development, some have slightly better motor skills and can walk with assistance, others are better able to communicate using limited speech and eye contact. But all girls suffer from a disease that robs them of their independence and leaves them multiple-handicapped and totally dependent on others. Most of the girls suffer from chronic seizures. In fact, some years Mary had more than 500/year.
Mary was hospitalized 100+ times, some stays lasting weeks. She had numerous surgeries and multiple bouts of pneumonia and on November 12th, 2017 my sister, my role model, our Mary died.
My father would often say that Mary “embraced her suffering” and it was true! Mary was a prisoner in a crippled and pain riddled body and yet. . .she was funny and loving and patient. She was almost always happy. I still don’t understand it. I imagine how embittered and miserable I would be suffering , unable to get others to understand my communications like not wanting to watch that show, listen to this song, eat that food; that I needed my diaper changed, that I wanted to go outside, that I wanted to go swimming, etc., But not Mary!! She spent most days laughing, clapping and teasing us. Best of all she loved us and she let each of us know she loved us.
I remember coming home from work one day, crying, feeling incredibly lonely. I jumped into Mary’s at-home hospital bed and complained about how I had no friends, Mary jerked her body closer, threw her arm around me and said ‘I love you’. Mary couldn’t say much because she didn’t have full control over her muscles which included her tongue but she could make some sounds and she used this ability to frequently tease us, put us in check, and let us know we were loved. Mary made our lives better in a very real way; she taught James, John, Peter, Danielle and I that it was one thing to mess with each other, but if anyone else messed with one of us - well, God help them. Mary taught us to not take ourselves too seriously, to laugh and enjoy life and, most importantly, Mary taught us how to really care for others even during the times it came at personal cost.
Mary enjoyed Disney Sing-A-Long songs and watched Disney movies as a form of therapy (to this day my siblings and I know the lyrics to almost every Disney Song - seriously, dare you to test our knowledge)
Mary also loved the water - partly due to her being born with the smell of the ocean luring her in and partly because the water relaxed her busy and exhausted muscles - and also because it gave her a chance to splash everyone when they least expected it.
Another of my favorite memories of Mary was when we all as a family (even my Mom) went swimming in our backyard pool late at night under the light of the moon. I know Mary loved us and without her we’re all a little lost. She was the glue that held us together and while we of course still love each other I see us drifting, each of us (myself included) caught up in our individual lives without Mary there to pull us all in. For this reason, I want to raise funds for a family vacation where we could have some time away to relax and reconnect, somewhere nice, surrounded by beach, somewhere Mary would have loved.
My family has been through a lot through the years and I want to do something big, something they won’t forget so I’m asking for $50,000 for a once in a lifetime vacation. It is my hope that we could go on this unforgettable, dream vacation to St. John’s where we could make memories like that of our moonlit swim. I would like to try and raise the money by June so we could celebrate Mary’s birthday there. It would mean a lot if you could help us realize this dream and we would very much appreciate your support.
- Anticipated Expenses -
Donation for Rett Syndrome Research Trust, in memory of Mary and in hope for a cure: $25,000
A Rental Home that will house all 11 of us: $1292/night for 9 nights - $11,628
Air Fare for all of us: in NJ - $3728 and in California - $1400
Food, Supplies and Activities: $8,244
I ask that you please send this link to 5 friends, share our story and help fund our hope for a cure and a chance to steal some time away where we can heal as a family! (#^-^#)
Help Rett girls by helping us raise a $25,000 donation to the Rett Syndrome Research Trust.
and
Help my family raise funds to go on a vacation where we can take some time away to heal
I'm asking you to please, in whatever small way you can, help us in the much-needed support of other Rett Girls by contributing to our goal of raising a $25,000 donation to the Rett Syndrome Research Trust, in Memory of Mary and in hope for a cure
And please help my family realize the dream of a vacation (we could otherwise not afford) somewhere we can reconnect - somewhere we can make memories. . . somewhere Mary would have loved.
I thought about writing this several times but always felt too awkward about asking for donations and was unsure of what to say. But, for the sake of my family, I’m putting aside my pride and asking for your help. The reason why I'm asking for help to fund our vacation is that I believe getting away would be a great way for all of us to heal after having lost our sister, but in order to do so, we first need your help. You see we don’t have the extra money to pay for all of us to getaway. We’ve tried saving but additional expenses always seem to come up. Like my father fracturing two vertebrae and having emergency gallbladder surgery, my mom’s eye surgeries, funeral expenses, multiple hospital bills and my college debt. We haven’t been able to save; even with all of us trying to pitch in.
It’s expensive for a big family to all go away together. You see, I come from a family of 9 which, through the years has grown into 11 - yea there are a lot of us. To start, there’s my Mom and Dad, me (Julia), James & John (the twins), Peter and Danielle. Then there’s some, unconventional though it may be who we’ve adopted along the way. Family not by blood, but a family nonetheless Kyle, my loving boyfriend, Dan (James’ long term boyfriend and hopefully one day fiancé *fingers crossed*), Nikki, Peter’s amazing girlfriend, and Ryan their beautiful 1 year old son. We used to be larger, but there are those whom we’ve lost - our second mom, Grandma Shutt, our 2 year old sister, Allison (Dec. 12th, 1997 - Aug.4th 1999) and. . . well. . . I guess, I should start at the beginning; the real reason why we need the time away to heal.
My sister, Mary was born with a terminal disease called Rett Syndrome for which there is no cure. Rett’s is a rare, genetic neurodevelopmental disorder caused by a defect in the X-chromosome. This means that girls are born severely disabled and with a myriad of symptoms including seizures, difficulty walking and loss of purposeful hand movement. Each girl differs slightly from the others in terms of development, some have slightly better motor skills and can walk with assistance, others are better able to communicate using limited speech and eye contact. But all girls suffer from a disease that robs them of their independence and leaves them multiple-handicapped and totally dependent on others. Most of the girls suffer from chronic seizures. In fact, some years Mary had more than 500/year.
Mary was hospitalized 100+ times, some stays lasting weeks. She had numerous surgeries and multiple bouts of pneumonia and on November 12th, 2017 my sister, my role model, our Mary died.
My father would often say that Mary “embraced her suffering” and it was true! Mary was a prisoner in a crippled and pain riddled body and yet. . .she was funny and loving and patient. She was almost always happy. I still don’t understand it. I imagine how embittered and miserable I would be suffering , unable to get others to understand my communications like not wanting to watch that show, listen to this song, eat that food; that I needed my diaper changed, that I wanted to go outside, that I wanted to go swimming, etc., But not Mary!! She spent most days laughing, clapping and teasing us. Best of all she loved us and she let each of us know she loved us.
I remember coming home from work one day, crying, feeling incredibly lonely. I jumped into Mary’s at-home hospital bed and complained about how I had no friends, Mary jerked her body closer, threw her arm around me and said ‘I love you’. Mary couldn’t say much because she didn’t have full control over her muscles which included her tongue but she could make some sounds and she used this ability to frequently tease us, put us in check, and let us know we were loved. Mary made our lives better in a very real way; she taught James, John, Peter, Danielle and I that it was one thing to mess with each other, but if anyone else messed with one of us - well, God help them. Mary taught us to not take ourselves too seriously, to laugh and enjoy life and, most importantly, Mary taught us how to really care for others even during the times it came at personal cost.
Mary enjoyed Disney Sing-A-Long songs and watched Disney movies as a form of therapy (to this day my siblings and I know the lyrics to almost every Disney Song - seriously, dare you to test our knowledge)
Mary also loved the water - partly due to her being born with the smell of the ocean luring her in and partly because the water relaxed her busy and exhausted muscles - and also because it gave her a chance to splash everyone when they least expected it.
Another of my favorite memories of Mary was when we all as a family (even my Mom) went swimming in our backyard pool late at night under the light of the moon. I know Mary loved us and without her we’re all a little lost. She was the glue that held us together and while we of course still love each other I see us drifting, each of us (myself included) caught up in our individual lives without Mary there to pull us all in. For this reason, I want to raise funds for a family vacation where we could have some time away to relax and reconnect, somewhere nice, surrounded by beach, somewhere Mary would have loved.
My family has been through a lot through the years and I want to do something big, something they won’t forget so I’m asking for $50,000 for a once in a lifetime vacation. It is my hope that we could go on this unforgettable, dream vacation to St. John’s where we could make memories like that of our moonlit swim. I would like to try and raise the money by June so we could celebrate Mary’s birthday there. It would mean a lot if you could help us realize this dream and we would very much appreciate your support.
- Anticipated Expenses -
Donation for Rett Syndrome Research Trust, in memory of Mary and in hope for a cure: $25,000
A Rental Home that will house all 11 of us: $1292/night for 9 nights - $11,628
Air Fare for all of us: in NJ - $3728 and in California - $1400
Food, Supplies and Activities: $8,244
I ask that you please send this link to 5 friends, share our story and help fund our hope for a cure and a chance to steal some time away where we can heal as a family! (#^-^#)
Organizer
Julia Keller
Organizer
Long Hill, NJ
