Jacoby's Journey
Donation protected
Meet my friend Jacoby. I have known his family for 5 years and see them at the BDSRA (Batten Disease Support & Research Association) family support conference every summer. Jacoby often stays in our affected care room at the conference.
We all know how it feels to be caught in a serious emergency situation of unexpected home repairs. In addition to care of your handicap child makes this situation is even more difficult. With grace, Jacoby's mom had to put her pride aside and seek immediate help for her little family. Thank you reading below and for donating directly to help this family close to my heart.
Who is Jacoby?
Jacoby is a sweet 17 year old boy. He lives with his single mom and younger sister in Mississippi. Jacoby has a rare fatal neurodegenerative brain disease called Neuronal Ceroid Lipofusinosis (NCL), also called Batten Disease, specifically he has CLN2. I know first hand taking care of a severely disabled child is physical and emotional exhausting. It is also a financial burden for the whole family. Jacoby has declined in the past year. When he is well he goes to school to receive the therapies that are vital for his health. At home he receives full care from his mom with eating, bathing, toileting and mobility. He is still able to communicate some needs with very few words and hand gestures. He can no longer stand or walk on his own.
Jacoby's Emergency:
Jacoby's has a special bathroom with a walk in shower and shower chair. It was recently discovered the shower water has been leaking under the floor causing a tremendous amount of mold and rot. This is the only bathroom in the home. (See the photos below. ) This rot has proceeded around the toilet and also into other rooms of their small mobile home. It needs to be repaired immediately as this is not a good environment for Jacoby, his mom and sister. This family has no close family in the area that can take them in while repairs are being done. Ronald McDonald House is two hours away from the kids’ school and staying in a shelter with a handicap child at this level is not possible option. Jacoby uses a CPAP machine every night for his breathing and must be in a hospital bed with rails for his own safety at night due to seizures. His mom will have to set up a bed on the floor of the hotel for Jacoby and his medical equipment. This family is going to struggle staying outside their home but they currently have no choice. They will need to stay at a hotel for approximately two weeks or until the repairs are completed.
The money raised from this page will go directly to the family expenses.
Thank you for reaching deep into your heart to help this family directly. It DOES make a difference in their lives. No donation is too small.
We all know how it feels to be caught in a serious emergency situation of unexpected home repairs. In addition to care of your handicap child makes this situation is even more difficult. With grace, Jacoby's mom had to put her pride aside and seek immediate help for her little family. Thank you reading below and for donating directly to help this family close to my heart.
Who is Jacoby?
Jacoby is a sweet 17 year old boy. He lives with his single mom and younger sister in Mississippi. Jacoby has a rare fatal neurodegenerative brain disease called Neuronal Ceroid Lipofusinosis (NCL), also called Batten Disease, specifically he has CLN2. I know first hand taking care of a severely disabled child is physical and emotional exhausting. It is also a financial burden for the whole family. Jacoby has declined in the past year. When he is well he goes to school to receive the therapies that are vital for his health. At home he receives full care from his mom with eating, bathing, toileting and mobility. He is still able to communicate some needs with very few words and hand gestures. He can no longer stand or walk on his own.
Jacoby's Emergency:
Jacoby's has a special bathroom with a walk in shower and shower chair. It was recently discovered the shower water has been leaking under the floor causing a tremendous amount of mold and rot. This is the only bathroom in the home. (See the photos below. ) This rot has proceeded around the toilet and also into other rooms of their small mobile home. It needs to be repaired immediately as this is not a good environment for Jacoby, his mom and sister. This family has no close family in the area that can take them in while repairs are being done. Ronald McDonald House is two hours away from the kids’ school and staying in a shelter with a handicap child at this level is not possible option. Jacoby uses a CPAP machine every night for his breathing and must be in a hospital bed with rails for his own safety at night due to seizures. His mom will have to set up a bed on the floor of the hotel for Jacoby and his medical equipment. This family is going to struggle staying outside their home but they currently have no choice. They will need to stay at a hotel for approximately two weeks or until the repairs are completed.
The money raised from this page will go directly to the family expenses.
Thank you for reaching deep into your heart to help this family directly. It DOES make a difference in their lives. No donation is too small.
Organizer and beneficiary
Heather Dainiak
Organizer
Petal, MS
Dixie Bergeron
Beneficiary
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