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I’ve hesitated whether or not to create this page, because well frankly... I’m a prideful person and don’t like asking for help. However, after a few conversations, I’ve decided - there’s nothing a mother wouldn’t do for her child, right?
This is my 6-year-old daughter, Ellie. She is vibrant, full of smiles and loves the simpler things in life - like water, wind, and funky voices! When she was just 6 months old, I noticed, Ellie, was no longer progressing with her development for her age group and was beginning to fall behind on monumental milestones. After speaking to Ellie’s pediatrician, our pediatrician decided that our best course of action was to refer us to the Neuro Development Department at our local children’s hospital. To no surprise, it took us TWO whole months before we could get in to be seen.
I still remember our first visit to the children’s hospital like it was yesterday. We went to that appointment knowing we could be bad news, but we never thought we would hear the words that would crush a mother’s heart that day. Immediately, within 5 minutes of our appointment – the doctor admitted Ellie into the hospital. We spent weeks in the same hospital room, countless needles, and tests and too many doctors to count. The doctors continuously changed her medication and at times her medication would make her sleep 23 hours out of the day. After weeks of what felt like torture waiting for answers, Ellie was diagnosed with Infantile Spasms which now has grown to be known as Lennox Gastraut Syndrome.
This news hit me like a freight train and for the next couple years, the hospital was our “home away from home”. During those first few years of getting through this, Ellie was always sick—her immune system was weak or her feeding tube would constantly clog and her doctors pushed for more and more tests. It felt like that time period would never come to an end.
Fast forward to now— Our sweet Ellie is almost 7 years old. She attends an amazing school where she gets the therapy she needs to thrive and the equipment to help her grow stronger and we are so thankful for that! But the reason I am writing this terribly long story is because we have run into a dead end. We want to provide Ellie with the same options she has at school, at home. After, copious amounts of research and looking into grant after grant... for some reason or another, Ellie does not qualify.
Our dream is to one day be able to build Ellie a house that she deserves—a hour that can provide absolutely everything she would need but unfortunately, that is out of the question right now. But we want to provide her the next best thing which is to try and make some modifications to our home and bring in get home equipment that will help now and in the years to come - as she grows older, bigger and heavier but with the outrageous cost of special needs equipment, that is financially hard (even after insurance) and as hard as this is to say, if you could donate even the smallest amount to help us, help our baby girl—we would forever thankful.
Thank you for reading this
post
— from a momma’s heart who only wants the best for her daughter
This is my 6-year-old daughter, Ellie. She is vibrant, full of smiles and loves the simpler things in life - like water, wind, and funky voices! When she was just 6 months old, I noticed, Ellie, was no longer progressing with her development for her age group and was beginning to fall behind on monumental milestones. After speaking to Ellie’s pediatrician, our pediatrician decided that our best course of action was to refer us to the Neuro Development Department at our local children’s hospital. To no surprise, it took us TWO whole months before we could get in to be seen.
I still remember our first visit to the children’s hospital like it was yesterday. We went to that appointment knowing we could be bad news, but we never thought we would hear the words that would crush a mother’s heart that day. Immediately, within 5 minutes of our appointment – the doctor admitted Ellie into the hospital. We spent weeks in the same hospital room, countless needles, and tests and too many doctors to count. The doctors continuously changed her medication and at times her medication would make her sleep 23 hours out of the day. After weeks of what felt like torture waiting for answers, Ellie was diagnosed with Infantile Spasms which now has grown to be known as Lennox Gastraut Syndrome.
This news hit me like a freight train and for the next couple years, the hospital was our “home away from home”. During those first few years of getting through this, Ellie was always sick—her immune system was weak or her feeding tube would constantly clog and her doctors pushed for more and more tests. It felt like that time period would never come to an end.
Fast forward to now— Our sweet Ellie is almost 7 years old. She attends an amazing school where she gets the therapy she needs to thrive and the equipment to help her grow stronger and we are so thankful for that! But the reason I am writing this terribly long story is because we have run into a dead end. We want to provide Ellie with the same options she has at school, at home. After, copious amounts of research and looking into grant after grant... for some reason or another, Ellie does not qualify.
Our dream is to one day be able to build Ellie a house that she deserves—a hour that can provide absolutely everything she would need but unfortunately, that is out of the question right now. But we want to provide her the next best thing which is to try and make some modifications to our home and bring in get home equipment that will help now and in the years to come - as she grows older, bigger and heavier but with the outrageous cost of special needs equipment, that is financially hard (even after insurance) and as hard as this is to say, if you could donate even the smallest amount to help us, help our baby girl—we would forever thankful.
Thank you for reading this
post— from a momma’s heart who only wants the best for her daughter