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This is Mia Isabella (my baby cousin). She is 5 years old and loves Disney princesses. Mia has the ability to make adults do all kinds of silly things. On Mother’s day she made everyone sing a made up Mother’s day song that sounded a lot like the happy birthday song just so she could blow out a candle. She once made me dress up as Rapunzel because she had a Rapunzel dress on too. We then held hands and paraded around our grandma’s house while Mia asked everyone there to take pictures of us. When she gets home from school she insists on changing into a princess dress and refuses to wear anything else. She likes to run around outside and play hide and seek with anyone who is willing to play. One of her favorite things is taking pictures on snapchat for the filters. She thinks it hilarious to watch people take them and to take some herself. Mia looks like the average 4 year old kid.
Not so long ago Mia began to get seizures and her family was told she was epileptic. As time went on her seizures were not lessening despite the medication she was prescribed. We also noticed that Mia was becoming increasingly clumsy and sometimes her legs would go out on her. Eventually, she was readmitted into the hospital, where more tests were done, and they found out she had a terminal disease.
Mia got diagnosed with late infantile batten disease, also known as LINCL or Jansky-Bielschowsky disease. This disease is categorized as a rare disease and it occurs in children between the ages of 2-4. It is an inherited neurodegenerative disease. Typically the first signs are seizures that “do not respond to drugs” and loss of muscle coordination. According to the Batten Disease Support and Research Association, children with late infantile Batten disease develop normally for the first few years then their progress begins to slow down and eventually regress. Some children are slow to talk, followed by epilepsy, and loss of motor skills. The children affected experience personality and behavior changes. Eventually skills like walking, talking, and playing are lost. By 4-5 years the children usually have myoclonic jerks of their limbs and head nods. They may have difficulties sleeping and become distressed around this time. Vision is gradually lost. By the age of 6 years, most will be completely dependent on families and care takers for all of their daily needs. They may need a feeding tube and their arms and legs may become stiff. Some children get frequent chest infections. Death usually occurs between the ages of 6 and 12 years. (visit http://bdsra.org/what-is-batten-disease/)
Although there are no cures available, we are currently seeking financial help for Mia's medical expenses and to help her parents during this difficult time. Anything is appreciated. Thank you so much!
Let’s raise awareness about Batten Disease so that research can continue and less children’s lives are claimed by such a debilitating disease.
My name is Brenda. I'm launching this campaign for my cousin's family since they are not involved in social media.
If you would like to contact the family with any information or messages, feel free to do so:
[email redacted]
Not so long ago Mia began to get seizures and her family was told she was epileptic. As time went on her seizures were not lessening despite the medication she was prescribed. We also noticed that Mia was becoming increasingly clumsy and sometimes her legs would go out on her. Eventually, she was readmitted into the hospital, where more tests were done, and they found out she had a terminal disease.
Mia got diagnosed with late infantile batten disease, also known as LINCL or Jansky-Bielschowsky disease. This disease is categorized as a rare disease and it occurs in children between the ages of 2-4. It is an inherited neurodegenerative disease. Typically the first signs are seizures that “do not respond to drugs” and loss of muscle coordination. According to the Batten Disease Support and Research Association, children with late infantile Batten disease develop normally for the first few years then their progress begins to slow down and eventually regress. Some children are slow to talk, followed by epilepsy, and loss of motor skills. The children affected experience personality and behavior changes. Eventually skills like walking, talking, and playing are lost. By 4-5 years the children usually have myoclonic jerks of their limbs and head nods. They may have difficulties sleeping and become distressed around this time. Vision is gradually lost. By the age of 6 years, most will be completely dependent on families and care takers for all of their daily needs. They may need a feeding tube and their arms and legs may become stiff. Some children get frequent chest infections. Death usually occurs between the ages of 6 and 12 years. (visit http://bdsra.org/what-is-batten-disease/)
Although there are no cures available, we are currently seeking financial help for Mia's medical expenses and to help her parents during this difficult time. Anything is appreciated. Thank you so much!
Let’s raise awareness about Batten Disease so that research can continue and less children’s lives are claimed by such a debilitating disease.
My name is Brenda. I'm launching this campaign for my cousin's family since they are not involved in social media.
If you would like to contact the family with any information or messages, feel free to do so:
[email redacted]
Organizer and beneficiary
Magdalena Morales
Beneficiary