HOME 4 HALOS
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Hunter is almost 18! And for most families and their 18 year olds, that means having the last summer at home before they’re off to college and becoming adults, and experiencing all that entails: from learning how to live on their own, budget money, have jobs, pay bills, show up to class on time (yes, even with a hangover), deal with relationship issues and plan for the future. But for parents of Angelman children, like Kevin, Merilisse and myself, we are doing nothing of the sort. As a matter of fact, Hunter’s 18th birthday is a day that I have absolutely dreaded since January 2006, when he was first diagnosed.
When Kevin and I headed home, after being told to prepare ourselves for the likelihood that Hunter would be diagnosed with Angelman Syndrome, once his blood test results returned, we bought every book we could find on this unknown journey we were about to take (which was only two textbooks, at the time). We stayed up all night reading about what our three-year-old’s future would look like. And, in the back of our minds, we also knew that this was the inevitable for the sixth-month-old baby girl down the hall, as well. We read first, that kids and adults with Angelman Syndrome are lovingly referred to as Angels! But then, we read that they would never progress past a three-year-old level cognitively, never talk, and they would never have independent lives. They would only ever have jobs that required minimal skills. And even still, they would need full assistance with those jobs. They would never understand the concept of danger, how to count money or how to drive. They would develop a seizure disorder, as well as, a severe sleep disorder. They may even face significant physical challenges. (Hunter has now had 13 surgeries, including two spinal fusions, and uses a walker to ambulate. And Taylor is right behind with two surgeries, including one spinal fusion, and also uses a walker part-time). As well, numerous medical issues would be a possibility. (Hunter has battled multiple pneumonias, that were nothing short of terrifying, as well as other serious infections along the way). Not to mention the things included in the massive amounts of dreams that I had dreamt up since that stick had turned blue, and we were officially going to be parents! No more Little League, building a tree house, riding bikes with his friends, football, girlfriends, a new truck in the driveway on his 16th birthday, a high school diploma, college, a wedding, children and for us, grand babies! Lots and lots of dreams!! That all came to a screeching halt. This branch of our family tree was immediately lopped off, right then and there.
As a mother, seeing my one, and then two-year-old little boy, become delayed in both progress and development, was extremely difficult. I wanted him to succeed. I had so many hopes and dreams for him! I wanted him to be crawling, and then toddling, just like the other Littles in our “Mommy and Me” classes. And at that age, we had no idea how significant his delays would be... Maybe he would catch up? Maybe the critics around me were right, and this was all my fault? He wasn’t reaching milestones because I wasn’t practicing with him enough, or pushing him enough? But in my heart, I knew that something far more serious was going on. So when we became pregnant with Taylor, I never allowed myself to dream for her. No ballet classes, girl talks, mani-pedis, prom dresses or grand babies. Not one dream. And that just happened to be my saving grace.... Because when Hunter was diagnosed with A.S. in January 2006, and then Taylor two weeks later, I only had to mourn the loss of one set of dreams. One dreamt up child.
The diagnosis shattered both Kevin and me. Our babies would need 24/7 care for the rest of their lives. And they would, in fact, outlive us.
“They would outlive us.” Even typing those four words now, almost 18 years in, makes my eyes well with tears, and I feel like the wind has been knocked out of me. And those four words, ring through my mind at least one-hundred times, Every. Single. Day. And have, since the moment we were diagnosed. I carry that load with me every second, of every moment, of every hour, of everyday. And I know that Kevin does too. It never leaves us.
So over the past decade, we’ve had to start devising a plan for our Angels’ future.
Plan A: Since the beginning, we have planned to place them together in a group-home type facility, once they became of age, so that caregivers could care for them, but they could also have somewhat of a more “independent” lifestyle, shared with their peers. This plan is very much a norm and widely accepted in California, as it best suits the needs of many families in our state. However, that plan has *never* sat well with me (and probably not with Kevin either). The thought of having them completely in the care of others full-time, with no way to regulate their care, is downright terrifying to me.
The statistics regarding sexual and physical abuse are nauseating:
▪▪People with intellectual disabilities -women and men- are sexually assaulted at a rate SEVEN TIMES higher than those without disabilities. (Justice Department from unpublished federal crime data, 2018)
▪▪People with disabilities are at a higher risk of abuse, neglect and being victims of crime. Estimates show they are at least FOUR to TEN TIMES more likely victims than people without disabilities are (Disability Rights California, 2020)
And realistically, the numbers have to be even higher than that. I absolutely cannot put my Angels into harm’s way, knowing their vulnerabilities. It makes me sick to my stomach to even think about.
So I came up with a Plan B. I want to buy the kids their own home, where the caregivers can live and work, on OUR turf. And you better believe that there will be cameras in every nook and cranny of that place! I feel like it will be a place that the kids can be safe and secure. Our parenting team can hire trusted caregivers under our own terms. And the children will be the judges of their own staff. We can monitor them, and be a part of their lives, but give them independence as well. I really see our Angels growing and flourishing in this setting, with all of the comforts that anyone should have in their own home. And my plan is for this to be their FOREVER HOME!
So here is my plea: Kevin’s job keeps him in the San Francisco Bay Area. When COVID-19 was not running rampant, he actually had to work in the city everyday. And that is his family’s means of living. So, in the Bay Area we must stay. However, San Francisco is ranked Number TWO as the most expensive city in the country to live (and its outskirts are not far behind). So I am asking for help in raising a down payment, in order to buy our Angels their Forever Home! These Halos need your help! Their safety, security, and future happiness surely would be solidified, if you are able to contribute to their fund. Your generosity would literally be life changing for our entire family.
I have started this fundraiser with a goal in mind for a down payment, that will then afford me the ability to be able to pay the monthly mortgage payments. Should our goal not be reached with this GoFundMe, all of the funds raised will be secured in a savings account. And, we as a family, will continue to save everything we can, until this dream of mine is accomplished!
Thank you for taking the time to read my story. It is appreciated more than you know. Warm hugs and slobbery Angel kisses to you all! #Home4Halos
Sincerely,
Erin Miller
Proud Mama of
Hunter & Taylor Kleinrock
When Kevin and I headed home, after being told to prepare ourselves for the likelihood that Hunter would be diagnosed with Angelman Syndrome, once his blood test results returned, we bought every book we could find on this unknown journey we were about to take (which was only two textbooks, at the time). We stayed up all night reading about what our three-year-old’s future would look like. And, in the back of our minds, we also knew that this was the inevitable for the sixth-month-old baby girl down the hall, as well. We read first, that kids and adults with Angelman Syndrome are lovingly referred to as Angels! But then, we read that they would never progress past a three-year-old level cognitively, never talk, and they would never have independent lives. They would only ever have jobs that required minimal skills. And even still, they would need full assistance with those jobs. They would never understand the concept of danger, how to count money or how to drive. They would develop a seizure disorder, as well as, a severe sleep disorder. They may even face significant physical challenges. (Hunter has now had 13 surgeries, including two spinal fusions, and uses a walker to ambulate. And Taylor is right behind with two surgeries, including one spinal fusion, and also uses a walker part-time). As well, numerous medical issues would be a possibility. (Hunter has battled multiple pneumonias, that were nothing short of terrifying, as well as other serious infections along the way). Not to mention the things included in the massive amounts of dreams that I had dreamt up since that stick had turned blue, and we were officially going to be parents! No more Little League, building a tree house, riding bikes with his friends, football, girlfriends, a new truck in the driveway on his 16th birthday, a high school diploma, college, a wedding, children and for us, grand babies! Lots and lots of dreams!! That all came to a screeching halt. This branch of our family tree was immediately lopped off, right then and there.
As a mother, seeing my one, and then two-year-old little boy, become delayed in both progress and development, was extremely difficult. I wanted him to succeed. I had so many hopes and dreams for him! I wanted him to be crawling, and then toddling, just like the other Littles in our “Mommy and Me” classes. And at that age, we had no idea how significant his delays would be... Maybe he would catch up? Maybe the critics around me were right, and this was all my fault? He wasn’t reaching milestones because I wasn’t practicing with him enough, or pushing him enough? But in my heart, I knew that something far more serious was going on. So when we became pregnant with Taylor, I never allowed myself to dream for her. No ballet classes, girl talks, mani-pedis, prom dresses or grand babies. Not one dream. And that just happened to be my saving grace.... Because when Hunter was diagnosed with A.S. in January 2006, and then Taylor two weeks later, I only had to mourn the loss of one set of dreams. One dreamt up child.
The diagnosis shattered both Kevin and me. Our babies would need 24/7 care for the rest of their lives. And they would, in fact, outlive us.
“They would outlive us.” Even typing those four words now, almost 18 years in, makes my eyes well with tears, and I feel like the wind has been knocked out of me. And those four words, ring through my mind at least one-hundred times, Every. Single. Day. And have, since the moment we were diagnosed. I carry that load with me every second, of every moment, of every hour, of everyday. And I know that Kevin does too. It never leaves us.
So over the past decade, we’ve had to start devising a plan for our Angels’ future.
Plan A: Since the beginning, we have planned to place them together in a group-home type facility, once they became of age, so that caregivers could care for them, but they could also have somewhat of a more “independent” lifestyle, shared with their peers. This plan is very much a norm and widely accepted in California, as it best suits the needs of many families in our state. However, that plan has *never* sat well with me (and probably not with Kevin either). The thought of having them completely in the care of others full-time, with no way to regulate their care, is downright terrifying to me.
The statistics regarding sexual and physical abuse are nauseating:
▪▪People with intellectual disabilities -women and men- are sexually assaulted at a rate SEVEN TIMES higher than those without disabilities. (Justice Department from unpublished federal crime data, 2018)
▪▪People with disabilities are at a higher risk of abuse, neglect and being victims of crime. Estimates show they are at least FOUR to TEN TIMES more likely victims than people without disabilities are (Disability Rights California, 2020)
And realistically, the numbers have to be even higher than that. I absolutely cannot put my Angels into harm’s way, knowing their vulnerabilities. It makes me sick to my stomach to even think about.
So I came up with a Plan B. I want to buy the kids their own home, where the caregivers can live and work, on OUR turf. And you better believe that there will be cameras in every nook and cranny of that place! I feel like it will be a place that the kids can be safe and secure. Our parenting team can hire trusted caregivers under our own terms. And the children will be the judges of their own staff. We can monitor them, and be a part of their lives, but give them independence as well. I really see our Angels growing and flourishing in this setting, with all of the comforts that anyone should have in their own home. And my plan is for this to be their FOREVER HOME!
So here is my plea: Kevin’s job keeps him in the San Francisco Bay Area. When COVID-19 was not running rampant, he actually had to work in the city everyday. And that is his family’s means of living. So, in the Bay Area we must stay. However, San Francisco is ranked Number TWO as the most expensive city in the country to live (and its outskirts are not far behind). So I am asking for help in raising a down payment, in order to buy our Angels their Forever Home! These Halos need your help! Their safety, security, and future happiness surely would be solidified, if you are able to contribute to their fund. Your generosity would literally be life changing for our entire family.
I have started this fundraiser with a goal in mind for a down payment, that will then afford me the ability to be able to pay the monthly mortgage payments. Should our goal not be reached with this GoFundMe, all of the funds raised will be secured in a savings account. And, we as a family, will continue to save everything we can, until this dream of mine is accomplished!
Thank you for taking the time to read my story. It is appreciated more than you know. Warm hugs and slobbery Angel kisses to you all! #Home4Halos
Sincerely,
Erin Miller
Proud Mama of
Hunter & Taylor Kleinrock
Co-organizers (3)
Erin Miller
Organizer
Castro Valley, CA
Kevin Kleinrock
Beneficiary
Merilisse Beyelia
Co-organizer