Moving mountains for Alex
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Meet Alex
Alex is a happy spirited six year old boy, who enjoys exploring and learning about the environment that surrounds him. He loves to be independent but due to his medical condition he is unable to do things that an average child from his age group can do. He is an amazing friend, a loyal brother and a wonderful son. He can bring the best out of anyone who becomes part of his life with his warmth, welcoming and brilliant smile.
We come from a humble place asking to our family and friends for help. Our son Alex suffers from a disease named Spinocerebellar Ataxia also known as (SCA), this is a rare condition and its inherited which causes progressive Cerebellar Ataxia, and it results in lack of muscle control and coordination of the upper and lower extremities. Besides this he also suffers from Dysarthria which affects his speech intelligibly, oral motor control and also Nystagmus and Oscillopsia (condition that stems from a problem with the alignment of the eyes or systems inside of the brain and inner ear that controls your body alignment and balance).
During our last appointment with his wonderful neurologist, at the Golisano Children’s Hospital attempted to get Alex into a medical research located in Miami, unfortunately his condition does not meet the criteria to qualify to get into the medical research that his Dr. suggested to get him tested through Athena Labs to get the exact type of ataxia to enhance the quality of medical treatment and hopefully qualify if a cure exists on a near future.
What is spinocerebellar ataxia?
Well, there are many different types of SCA, they are classified according to the mutated (altered) gene responsible for the specific type of SCA. The types are described followed by a number, according to their order of identification. In fact there are 40 types of spinocerebellar ataxia and the numbers continues to grow.
There are many different types of spinocerebellar ataxia (SCA) and each may have unique signs and symptoms. However, in general, it is difficult to differentiate among the different types, and all are characterized by problems with movement that tend to get worse over time. Affected people may experience the following:
• Problems with coordination and balance (ataxia)
• Uncoordinated walk
• Poor hand-eye coordination
• Abnormal speech (dysarthria)
• Involuntary eye movement
• Sensory processing disorder
• Vision problems
• Difficulty processing, learning, and remembering information
By learning what type of SCA, we could learn what caused Alex to suffer from this disease which began when he was about 9 months old, besides this we could also know how to help other children that suffer from SCA around the world and extend Alex’s network of services and guide his therapists and medical professionals into providing the best medical treatments available at this moment.
Once we have an official name for his medical condition this will mean for Alex to travel wherever his medical specialist’s team suggests for a treatment plan. At this moment our family owns only one vehicle to transport him, which is not wheelchair accessible. His medical insurance will approve a ramp to have it installed on an accessible van, which we don’t have at this current time. With the money collected we should be able to find a vehicle that facilitates us to transport Alex to his medical appointments and his upcoming therapy sessions. If needed I have a copy of a letter made by his neurologist explaining why he would benefit from an wheelchair accessible vehicle and a quote for it. done by the company Movin' on Mobility.
In addition to this, Alex has an upcoming appointment with an eye Optometrist that does not take his medical insurance. This Dr. Dalesio is a behavioral optometrist specialized in diagnosis and treatment of learning-related vision problems. We believe he’ll play a crucial role in Alex’s overall development because due to his vision impairment.
We believe that by getting the genetic testing done by Athena labs, consultations with Dr. Dalesio and by having a wheelchair accessible vehicle we as a family can provide for Alex all the treatments suggested by his medical team.
I will continue to post updates as our timeline moves along. Thank you so much for being part of our journey.
*update*
Alex’s story was aired in our local fox news channel!
https://www.fox4now.com/news/local-news/mom-trying-to-bring-awareness-to-sons-condition
Thank you for your time,
Elizabeth Pineda
[email redacted]
Alex is a happy spirited six year old boy, who enjoys exploring and learning about the environment that surrounds him. He loves to be independent but due to his medical condition he is unable to do things that an average child from his age group can do. He is an amazing friend, a loyal brother and a wonderful son. He can bring the best out of anyone who becomes part of his life with his warmth, welcoming and brilliant smile.
We come from a humble place asking to our family and friends for help. Our son Alex suffers from a disease named Spinocerebellar Ataxia also known as (SCA), this is a rare condition and its inherited which causes progressive Cerebellar Ataxia, and it results in lack of muscle control and coordination of the upper and lower extremities. Besides this he also suffers from Dysarthria which affects his speech intelligibly, oral motor control and also Nystagmus and Oscillopsia (condition that stems from a problem with the alignment of the eyes or systems inside of the brain and inner ear that controls your body alignment and balance).
During our last appointment with his wonderful neurologist, at the Golisano Children’s Hospital attempted to get Alex into a medical research located in Miami, unfortunately his condition does not meet the criteria to qualify to get into the medical research that his Dr. suggested to get him tested through Athena Labs to get the exact type of ataxia to enhance the quality of medical treatment and hopefully qualify if a cure exists on a near future.
What is spinocerebellar ataxia?
Well, there are many different types of SCA, they are classified according to the mutated (altered) gene responsible for the specific type of SCA. The types are described followed by a number, according to their order of identification. In fact there are 40 types of spinocerebellar ataxia and the numbers continues to grow.
There are many different types of spinocerebellar ataxia (SCA) and each may have unique signs and symptoms. However, in general, it is difficult to differentiate among the different types, and all are characterized by problems with movement that tend to get worse over time. Affected people may experience the following:
• Problems with coordination and balance (ataxia)
• Uncoordinated walk
• Poor hand-eye coordination
• Abnormal speech (dysarthria)
• Involuntary eye movement
• Sensory processing disorder
• Vision problems
• Difficulty processing, learning, and remembering information
By learning what type of SCA, we could learn what caused Alex to suffer from this disease which began when he was about 9 months old, besides this we could also know how to help other children that suffer from SCA around the world and extend Alex’s network of services and guide his therapists and medical professionals into providing the best medical treatments available at this moment.
Once we have an official name for his medical condition this will mean for Alex to travel wherever his medical specialist’s team suggests for a treatment plan. At this moment our family owns only one vehicle to transport him, which is not wheelchair accessible. His medical insurance will approve a ramp to have it installed on an accessible van, which we don’t have at this current time. With the money collected we should be able to find a vehicle that facilitates us to transport Alex to his medical appointments and his upcoming therapy sessions. If needed I have a copy of a letter made by his neurologist explaining why he would benefit from an wheelchair accessible vehicle and a quote for it. done by the company Movin' on Mobility.
In addition to this, Alex has an upcoming appointment with an eye Optometrist that does not take his medical insurance. This Dr. Dalesio is a behavioral optometrist specialized in diagnosis and treatment of learning-related vision problems. We believe he’ll play a crucial role in Alex’s overall development because due to his vision impairment.
We believe that by getting the genetic testing done by Athena labs, consultations with Dr. Dalesio and by having a wheelchair accessible vehicle we as a family can provide for Alex all the treatments suggested by his medical team.
I will continue to post updates as our timeline moves along. Thank you so much for being part of our journey.
*update*
Alex’s story was aired in our local fox news channel!
https://www.fox4now.com/news/local-news/mom-trying-to-bring-awareness-to-sons-condition
Thank you for your time,
Elizabeth Pineda
[email redacted]
Organizer
Elizabeth Pineda
Organizer
Lehigh Acres, FL
