She did it! - Anakha's Hope
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Dear Friends,
Please read about our journey at:
http://www.scarymommy.com/dying-child-dont-give-up/
http://rebootsocial.com/are-mothers-of-children-with-life-threatening-illnesses-chosen/
Over the past nearly two years, many of you have asked us, “How can we help?” We are so thankful for your time, your calls, your patience and your prayers.
As many of you know, at 13 months old, Anakha was diagnosed with an incredibly rare terminal illness, Multiple Mitochondrial Disease Syndrome, Type 3.
At the time of diagnosis, there were only 3 other children diagnosed with this condition, who had all passed away.
No one expected Anakha to survive past 15 months old. But, by the grace of God and the magic of science, Anakha is still here, at 2.5 years old, and healing.
All we want is for Anakha to enjoy her life. We want her to thrive. She is so strong and determined, we want nothing to stand in her way!
As she gets older, her needs are changing and increasing. Government covered therapy (known as Early Intervention) means that Anakha is seen a maximum of 3-12 visits a year, if that.
Anakha’s therapists have recommended private therapy.
Private therapy is incredibly expensive, and our private insurance covers about three sessions a year. Currently, Anakha attends private physiotherapy biweekly. Each session costs $130 (which is entirely normal for pediatric physiotherapy).
It has been a game changer. Within three sessions, Anakha pushed herself up onto her knees. After two months of private therapy, she took steps. And just recently, she started independently walking in a gait trainer.
We believe Anakha would greatly benefit from additional private therapies (such as occupational therapy, speech therapy, Anat Baniel Method, and Conductive Education).
Another area of concern is the cost of specialized equipment. Some equipment is partially covered by Government plans and there are sources of partial funding, but the application and approval process takes months (which I always fear Anakha may not have). And several essential items (such as a wheelchair accessible van, which costs approximately $75,000, or specialized seating such as a “Hi-Lo Chair” which can cost over $5000), has limited or no coverage at all.
Because Anakha’s condition can be exacerbated by infection (to the point of suffering another devastating regression), she cannot attend preschool. I had to resign from my full-time job, and am trying to work part-time from home, while providing Anakha with 24/7 care, while my husband juggles multiple part-time jobs, so that we can minimize infection risk, and maximize the time we are blessed to have with our daughter.
We are determined to give Anakha every opportunity possible to grow and live, no matter what the cost.
To read more about our journey, please visit Reboot Social.
Thank you for your love and support!
Please read about our journey at:
http://www.scarymommy.com/dying-child-dont-give-up/
http://rebootsocial.com/are-mothers-of-children-with-life-threatening-illnesses-chosen/
Over the past nearly two years, many of you have asked us, “How can we help?” We are so thankful for your time, your calls, your patience and your prayers.
As many of you know, at 13 months old, Anakha was diagnosed with an incredibly rare terminal illness, Multiple Mitochondrial Disease Syndrome, Type 3.
At the time of diagnosis, there were only 3 other children diagnosed with this condition, who had all passed away.
No one expected Anakha to survive past 15 months old. But, by the grace of God and the magic of science, Anakha is still here, at 2.5 years old, and healing.
All we want is for Anakha to enjoy her life. We want her to thrive. She is so strong and determined, we want nothing to stand in her way!
As she gets older, her needs are changing and increasing. Government covered therapy (known as Early Intervention) means that Anakha is seen a maximum of 3-12 visits a year, if that.
Anakha’s therapists have recommended private therapy.
Private therapy is incredibly expensive, and our private insurance covers about three sessions a year. Currently, Anakha attends private physiotherapy biweekly. Each session costs $130 (which is entirely normal for pediatric physiotherapy).
It has been a game changer. Within three sessions, Anakha pushed herself up onto her knees. After two months of private therapy, she took steps. And just recently, she started independently walking in a gait trainer.
We believe Anakha would greatly benefit from additional private therapies (such as occupational therapy, speech therapy, Anat Baniel Method, and Conductive Education).
Another area of concern is the cost of specialized equipment. Some equipment is partially covered by Government plans and there are sources of partial funding, but the application and approval process takes months (which I always fear Anakha may not have). And several essential items (such as a wheelchair accessible van, which costs approximately $75,000, or specialized seating such as a “Hi-Lo Chair” which can cost over $5000), has limited or no coverage at all.
Because Anakha’s condition can be exacerbated by infection (to the point of suffering another devastating regression), she cannot attend preschool. I had to resign from my full-time job, and am trying to work part-time from home, while providing Anakha with 24/7 care, while my husband juggles multiple part-time jobs, so that we can minimize infection risk, and maximize the time we are blessed to have with our daughter.
We are determined to give Anakha every opportunity possible to grow and live, no matter what the cost.
To read more about our journey, please visit Reboot Social.
Thank you for your love and support!
Organizer
Savitha Thampi
Organizer
Mississauga, ON
