MAKING AN EXCEPTIONAL HOME FOR EVA
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EVA-LUTION --- MAKING AN EXCEPTIONAL HOUSE FOR AN EXCEPTIONAL LITTLE GIRL
Eva (bottom left), was born with a neurological malformation that affects both her gross and fine motor skills. One month after her birth, Katie (Eva’s mom) was diagnosed with terminal cancer. While fighting for her life, Katie and Brian (Eva’s dad) were taking Eva to various specialists to help understand what was happening with their daughter and how they could help.
Eva was eventually diagnosed with Septo Optic Dysplasia, as well as, Cerebral Ventriculomegaly. Septro Optic Dysplasia has three characteristics; underdevelopment of the optic nerve, abnormal formation of the midline brain, and pituitary hypoplasia. The underdevelopment of the optic nerve causes impaired vision in her eyes. The abnormal formation of the midline brain causes intellectual disability and other neurological problems. And the pituitary hypoplasia affects growth and hormone levels. Cerebral Ventriculomegaly is a brain condition that occurs in the fetus, also known as hydrocephalus.
By six months, Eva was wearing glasses and being monitored by a variety of specialists. Therapy for all sorts of physical and mental functions were being set up in hopes of helping Eva make minor but monumental steps to a normal life. While all this was happening, Katie continuing to fight her battle with cancer.
18 months after Eva entered this world, her mom Katie lost her battle with cancer.
At the age of 31, and after 10 years of marriage and two beautiful daughters (one with special needs), Brian found himself a widower. In order care for his children and especially for Eva, Brian left his job and took on the role of full-time caregiver.
This year Eva is turning 9. Over the last two years, Eva has developed Atonic Drop Attack Seizures and a severe form of epilepsy called Lennox-Gastaut Syndrome. Eva’s seizures can last for hours at a time.
She continues to participate in occupational therapy, physical therapy and speech therapy on a weekly basis. While Eva has made slow progressions, she is still unable to walk, talk, and is 100% dependent on her dad and those who work with her. The last 9 years of therapy have given her the ability to pick up food and feed herself (with a lot of supervision or the food would be around the room). She is in a gait trainer and a stander every day at. With special braces, Eva is being encouraged and reinforced to walk. Furniture and the floor pose a constant hazard to her as she strengthens her body and trains her brain to react to situations that most of us take for granted.
THE MEANING OF EVA-LUTION
Eva is in need of a more adaptable home environment. Not only would this help her navigate her daily challenges and apply what she learns at school and therapy, but it would enable Brian and her older sister, Zoë, to further assist her.
I’ve created this page in hopes to raise the funds needed to build an EXCEPTIONAL home for my granddaughter EVA. One that will provide more safety for her as she works on mastering simple tasks a lot of us take for granted. An environment and home that would be handicap accessible and allow for daily therapy.
THE COSTS
Brian and Katie were able to save up a bit before she passed, but that savings account is dwindling each month as the mortgage and other bills come in. Their home is small (980sq’), but it makes more sense financially to stay in the only home the girls have ever known. Unfortunately, Eva and her special needs equipment are starting to outgrow their home in its current state. It’s difficult for her to move from room to room with her wheelchair. Widening the doorways are a must and adding a monitoring system will help her dad keep an eye on her at all times. Adding an additional bedroom that is ADA accessible along with an additional room for therapy equipment so Eva can continue to develop. Eva is growing every day and getting to the point where it is becoming more and more difficult for Brian to lift. Equipment wise Eva needs a ceiling lift to assist Brian in moving her into and from her bed and a new high chair as she is outgrowing her current one.
Eva has such a big heart and is excited by the little things in life. She loves watching old movies with her family, listening to reggae music, and going for walks with her Dad as her sister rides bike next to them. Eva is gluten, dairy and soy intolerant, which makes things more difficult, but she loves her veggie straws. They are her motivation to get through the tough days at physical therapy.
Please feel free to contact us at any time with questions, thoughts, ideas, or names of businesses in the Orlando area that work on special needs projects.
Thank you with all of my heart!!!
Eva (bottom left), was born with a neurological malformation that affects both her gross and fine motor skills. One month after her birth, Katie (Eva’s mom) was diagnosed with terminal cancer. While fighting for her life, Katie and Brian (Eva’s dad) were taking Eva to various specialists to help understand what was happening with their daughter and how they could help.
Eva was eventually diagnosed with Septo Optic Dysplasia, as well as, Cerebral Ventriculomegaly. Septro Optic Dysplasia has three characteristics; underdevelopment of the optic nerve, abnormal formation of the midline brain, and pituitary hypoplasia. The underdevelopment of the optic nerve causes impaired vision in her eyes. The abnormal formation of the midline brain causes intellectual disability and other neurological problems. And the pituitary hypoplasia affects growth and hormone levels. Cerebral Ventriculomegaly is a brain condition that occurs in the fetus, also known as hydrocephalus.
By six months, Eva was wearing glasses and being monitored by a variety of specialists. Therapy for all sorts of physical and mental functions were being set up in hopes of helping Eva make minor but monumental steps to a normal life. While all this was happening, Katie continuing to fight her battle with cancer.
18 months after Eva entered this world, her mom Katie lost her battle with cancer.
At the age of 31, and after 10 years of marriage and two beautiful daughters (one with special needs), Brian found himself a widower. In order care for his children and especially for Eva, Brian left his job and took on the role of full-time caregiver.
This year Eva is turning 9. Over the last two years, Eva has developed Atonic Drop Attack Seizures and a severe form of epilepsy called Lennox-Gastaut Syndrome. Eva’s seizures can last for hours at a time.
She continues to participate in occupational therapy, physical therapy and speech therapy on a weekly basis. While Eva has made slow progressions, she is still unable to walk, talk, and is 100% dependent on her dad and those who work with her. The last 9 years of therapy have given her the ability to pick up food and feed herself (with a lot of supervision or the food would be around the room). She is in a gait trainer and a stander every day at. With special braces, Eva is being encouraged and reinforced to walk. Furniture and the floor pose a constant hazard to her as she strengthens her body and trains her brain to react to situations that most of us take for granted.
THE MEANING OF EVA-LUTION
Eva is in need of a more adaptable home environment. Not only would this help her navigate her daily challenges and apply what she learns at school and therapy, but it would enable Brian and her older sister, Zoë, to further assist her.
I’ve created this page in hopes to raise the funds needed to build an EXCEPTIONAL home for my granddaughter EVA. One that will provide more safety for her as she works on mastering simple tasks a lot of us take for granted. An environment and home that would be handicap accessible and allow for daily therapy.
THE COSTS
Brian and Katie were able to save up a bit before she passed, but that savings account is dwindling each month as the mortgage and other bills come in. Their home is small (980sq’), but it makes more sense financially to stay in the only home the girls have ever known. Unfortunately, Eva and her special needs equipment are starting to outgrow their home in its current state. It’s difficult for her to move from room to room with her wheelchair. Widening the doorways are a must and adding a monitoring system will help her dad keep an eye on her at all times. Adding an additional bedroom that is ADA accessible along with an additional room for therapy equipment so Eva can continue to develop. Eva is growing every day and getting to the point where it is becoming more and more difficult for Brian to lift. Equipment wise Eva needs a ceiling lift to assist Brian in moving her into and from her bed and a new high chair as she is outgrowing her current one.
Eva has such a big heart and is excited by the little things in life. She loves watching old movies with her family, listening to reggae music, and going for walks with her Dad as her sister rides bike next to them. Eva is gluten, dairy and soy intolerant, which makes things more difficult, but she loves her veggie straws. They are her motivation to get through the tough days at physical therapy.
Please feel free to contact us at any time with questions, thoughts, ideas, or names of businesses in the Orlando area that work on special needs projects.
Thank you with all of my heart!!!
Organizer and beneficiary
Debi Kulbaba
Organizer
Alburtis, PA
BRIAN KULBABA
Beneficiary