Jade's struggle & Aicardi Syndrome
Donation protected
JADES STORY
In 2013, Karen’s pregnancy was not unlike most women’s experience, she was in good health, happy, and looking forward to the birth of their first child with her husband Hugh. It was three weeks away from Karen’s due date that changed their lives forever. A discovery was made during one of the scans, and after consultation with a panel of specialists it was determined that Karen and Hugh’s first child was in grave danger and there was a great possibility of death at birth or shortly after. This was devastating news, not only to Karen and Hugh, but for their immediate and extended family as well.
It was at six months of age that the brain anomalies seen three weeks prior to giving birth to their beautiful baby girl, came as a diagnosis of Aicardi Syndrome. This is a rare genetic malformation characterized by the partial or complete absence of a key structure called the Corpus Callosum, which is the bridge between the two halves of the brain. Symptoms include the presence of retinal abnormalities, resulting in varying degrees of visual impairment to blindness, and seizures in the form of infantile spasms. The seizures themselves increase developmental delays. Aicardi Syndrome affects females primarily 99% of the time, and it has been estimated that there are only 300 to 500 cases of this rare condition worldwide.
Jade has suffered frequent seizures throughout each day since three months of age. She is unable to stand or walk, is visually impaired, and is unable to express her needs verbally. As Jade continues to grow she will require physiotherapy to increase her physical strength, a walking apparatus, learning devices, speech therapy, special dietary needs, medication that controls Jades seizures and which is not fully covered by Insurance, home and transportation modifications. Karen and Hugh, too, will need emotional support and guidance as they soldier on despite feeling helpless and paralysed by their daily fears of further brain damage to Jade, as a result of continued seizures. These pressures have made it impossible for Karen and Hugh to continue their careers since the birth of their precious child.
Jade is a beautiful girl who inspires love and hope to anyone that looks into her eyes and holds her in their arms. It is our hope that you will support this young couple and their beautiful child by sharing this post with family, friends, co-workers and acquaintances. Please consider making a donation to help this family to meet Jade’s present and future needs, and to raise awareness of this rare syndrome, Aicardi Syndrome.
Karen and Hugh is a very loving young couple and hope only the best of care and future for their daughter Jade who turned 2 years old November 2015.
We THANK YOU for your support.
Prayers are welcomed as well.
In 2013, Karen’s pregnancy was not unlike most women’s experience, she was in good health, happy, and looking forward to the birth of their first child with her husband Hugh. It was three weeks away from Karen’s due date that changed their lives forever. A discovery was made during one of the scans, and after consultation with a panel of specialists it was determined that Karen and Hugh’s first child was in grave danger and there was a great possibility of death at birth or shortly after. This was devastating news, not only to Karen and Hugh, but for their immediate and extended family as well.
It was at six months of age that the brain anomalies seen three weeks prior to giving birth to their beautiful baby girl, came as a diagnosis of Aicardi Syndrome. This is a rare genetic malformation characterized by the partial or complete absence of a key structure called the Corpus Callosum, which is the bridge between the two halves of the brain. Symptoms include the presence of retinal abnormalities, resulting in varying degrees of visual impairment to blindness, and seizures in the form of infantile spasms. The seizures themselves increase developmental delays. Aicardi Syndrome affects females primarily 99% of the time, and it has been estimated that there are only 300 to 500 cases of this rare condition worldwide.
Jade has suffered frequent seizures throughout each day since three months of age. She is unable to stand or walk, is visually impaired, and is unable to express her needs verbally. As Jade continues to grow she will require physiotherapy to increase her physical strength, a walking apparatus, learning devices, speech therapy, special dietary needs, medication that controls Jades seizures and which is not fully covered by Insurance, home and transportation modifications. Karen and Hugh, too, will need emotional support and guidance as they soldier on despite feeling helpless and paralysed by their daily fears of further brain damage to Jade, as a result of continued seizures. These pressures have made it impossible for Karen and Hugh to continue their careers since the birth of their precious child.
Jade is a beautiful girl who inspires love and hope to anyone that looks into her eyes and holds her in their arms. It is our hope that you will support this young couple and their beautiful child by sharing this post with family, friends, co-workers and acquaintances. Please consider making a donation to help this family to meet Jade’s present and future needs, and to raise awareness of this rare syndrome, Aicardi Syndrome.
Karen and Hugh is a very loving young couple and hope only the best of care and future for their daughter Jade who turned 2 years old November 2015.
We THANK YOU for your support.
Prayers are welcomed as well.
Organizer
Joy-Anne Coomber
Organizer
Freelton, ON
