Hope4Xan, his journey with HH
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Alexandros “ChuChu Xan” Ramsaran was diagnosed with a Hypothalamic Hamartoma (HH), a rare benign
brain tumor, on December 17, 2013 at 2 ½ years old.
Mission
Our mission is to not only raise Hypothalamic Hamartoma (HH) awareness and support Xan and his family during this difficult time but to also raise awareness of our Lord and Saviour Jesus Christ, without whom we would not have this "hope". We are thankful that our hope is not in men and doctors but in the One and Only True God who is able to do exceeding more than we could ever ask or imagine.
Alexandros “ChuChu Xan” Ramsaran was diagnosed with a Hypothalamic Hamartoma (HH), a rare brain tumor, on December 17, 2013 at 2 ½ years old. HH causes seizures, developmental delays, and precocious (early) puberty along with other endocrine dysfunction. Xan’s HH is located in the hypothalamus and is pressing on the pituitary gland, optic chiasm, brain stem and frontal lobe. Due to the tumor, he h...as intractable seizures (seizures that do not respond to medication), endocrine dysfunction (hormone imbalance), vision impairment (it is likely he has lost his peripheral vision), and developmental and cognitive delays.
Although he is on anti-seizure medication, it only limits the number of seizures he has. Xan suffers from on-going nightly seizures (anywhere from 2-10 a night): his seizure patterns range from partial complex seizures, generalized seizures and grand mal seizures. Xan also suffers from anxiety, infections, delayed brain development (delayed myelination) and endocrine dysfunction including: weight/growth, limited blood and oxygen flow to the brain, unusual taste buds resulting in the desire to consume non-food products that result in the liver not being able to function properly, and difficulty retaining water for proper body function resulting in a risk of developing Diabetes Insipidus (DI).
There are very few hospitals in the country, and even fewer neurosurgeons, that are knowledgeable in his rare condition. Traveling out of state will most likely be necessary for Xan to be given the best care possible. We are in the process of contacting and having his case reviewed by the most well-known hospitals and neurosurgeons in the country for his disease. Their initial opinions are open brain surgery followed by radiation, or laser surgery followed by open brain surgery to remove a portion of his frontal lobe. Although surgery is the most likely chance for Xan to have a seizure free life, it does come with its own risks. Short-term memory loss, further developmental delays/setbacks, cognitive delays, further damage to the optic nerves, removal of the hypothalamus and/or pituitary resulting in life long hormonal replacement therapies are some of the risks involved with surgery.
Xan is a very out-going, fun, loving, rambunctious 3 year old boy that enjoys swimming, boating, biking and going to the park, zoo and beach. He has a 4 year old brother, Giovanni (Gio) and a 2 year old sister, Isabella (Izzy). We are so thankful for all your support and prayers through this time.
"Rejoicing in hope, persevering in tribulation, devoted to prayer." Romans 12:12
brain tumor, on December 17, 2013 at 2 ½ years old.
Mission
Our mission is to not only raise Hypothalamic Hamartoma (HH) awareness and support Xan and his family during this difficult time but to also raise awareness of our Lord and Saviour Jesus Christ, without whom we would not have this "hope". We are thankful that our hope is not in men and doctors but in the One and Only True God who is able to do exceeding more than we could ever ask or imagine.
Alexandros “ChuChu Xan” Ramsaran was diagnosed with a Hypothalamic Hamartoma (HH), a rare brain tumor, on December 17, 2013 at 2 ½ years old. HH causes seizures, developmental delays, and precocious (early) puberty along with other endocrine dysfunction. Xan’s HH is located in the hypothalamus and is pressing on the pituitary gland, optic chiasm, brain stem and frontal lobe. Due to the tumor, he h...as intractable seizures (seizures that do not respond to medication), endocrine dysfunction (hormone imbalance), vision impairment (it is likely he has lost his peripheral vision), and developmental and cognitive delays.
Although he is on anti-seizure medication, it only limits the number of seizures he has. Xan suffers from on-going nightly seizures (anywhere from 2-10 a night): his seizure patterns range from partial complex seizures, generalized seizures and grand mal seizures. Xan also suffers from anxiety, infections, delayed brain development (delayed myelination) and endocrine dysfunction including: weight/growth, limited blood and oxygen flow to the brain, unusual taste buds resulting in the desire to consume non-food products that result in the liver not being able to function properly, and difficulty retaining water for proper body function resulting in a risk of developing Diabetes Insipidus (DI).
There are very few hospitals in the country, and even fewer neurosurgeons, that are knowledgeable in his rare condition. Traveling out of state will most likely be necessary for Xan to be given the best care possible. We are in the process of contacting and having his case reviewed by the most well-known hospitals and neurosurgeons in the country for his disease. Their initial opinions are open brain surgery followed by radiation, or laser surgery followed by open brain surgery to remove a portion of his frontal lobe. Although surgery is the most likely chance for Xan to have a seizure free life, it does come with its own risks. Short-term memory loss, further developmental delays/setbacks, cognitive delays, further damage to the optic nerves, removal of the hypothalamus and/or pituitary resulting in life long hormonal replacement therapies are some of the risks involved with surgery.
Xan is a very out-going, fun, loving, rambunctious 3 year old boy that enjoys swimming, boating, biking and going to the park, zoo and beach. He has a 4 year old brother, Giovanni (Gio) and a 2 year old sister, Isabella (Izzy). We are so thankful for all your support and prayers through this time.
"Rejoicing in hope, persevering in tribulation, devoted to prayer." Romans 12:12
Organizer
Nicole Sardiña
Organizer
Satellite Beach, FL
