Overcoming Tay Sachs with Unconditional Love
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The Amani Family – Overcoming Tay Sachs with Unconditional Love
The Amani Family have two sweet, loving brothers that are inseparable: Danial (16) and Mahan (12). Both, Danial and Mahan, suffer from an incredibly rare disease named Juvenile Tay Sachs. Although unable to speak and use their motor skills, the boys enjoy being around other children and form radiant smiles at the sound of their parent’s voices. This is a story of a family, facing difficult circumstances through no fault of their own, continuing to demonstrate the purest form of love.
Danial and Mahan grew up in a very loving and playful home in Iran. Danial lived a very normal childhood until the age of 3.5 when he started to lose his ability to hold toys, to stand up, to walk and talk. At that time, Danial’s mom was pregnant with Mahan. While his symptoms progressed, doctors in Iran were unable to figure out what was causing Danial’s regression. Mr. and Mrs. Amani began to live a parent’s worst nightmare—watching their beautiful baby boy unable to do the normal things he once could and not knowing why to stop it from progressing. They feared the same would happen to Mahan, which it did. Mahan’s symptoms similarly began to present at 3.5 years old. Prior to his symptoms, Mahan would come to every doctor’s appointment with Danial, answering every question doctors would ask about his big brother, most of the times with a funny sense of humor. Then one day, Mahan stopped talking. Eventually, one doctor in Iran took a biopsy of the boys and sent it to Johns Hopkins. Three months later, his parents received the diagnosis, one that no parent should ever live through. Juvenile Tay Sachs disease: an inherited disorder that progressively destroys nerve cells (neurons) in the brain and spinal cord. Both their sons had it and their symptoms would only worsen.
Due to the rarity of the disease and little information known about it, Danial and Mahan were denied insurance and medication coverage in Iran. Doing what any parent would do, Danial and Mahan’s parents packed their bags and left for Dubai to find work and get insurance and medication for their boys. Mr. Amani (Habib) worked as a Tour Guide so that he could learn English to be able to understand research on Tay Sachs and hopefully one day move his family to the United States. However, they were denied visas, 5 times. Refusing to give up fighting for his sons, Mr. Amani finally got in touch with The National Tay-Sachs and Allied Diseases Association (NTSAD) and received a visa with their help to attend a Tay Sachs conference in Orlando, Florida in 2016. One week later, researchers from Mass General, whom they met at the conference, invited the family to Boston and admitted Danial to Mass General Hospital for 45 days. Unfortunately, Danial got very sick during his stay and lost more than 10 kg. He eventually was discharged to UMass Memorial to regain his deteriorating strength back. Since then, Mr. Amani and his wife have been taking care of their boys with unconditional love, thankful that someone at NTSAD took a chance on them and grateful that the researchers they met at the conference in Orlando took a leap of faith with them.
Today, there is no cure for Tay Sachs. Danial and Mahan are now 16 and 12 years old and wheelchair bound. Throughout the years, they have had a gradual loss of vision and hearing, increasing muscle stiffness and restricted movements (spasticity), paralysis, deterioration of their cognitive processes (dementia and intellectual disability), and seizures. No medication can stop this disease from progressing but that has not stopped Mr. and Mrs. Amani from loving their boys like any other parent and striving to do anything they can to help find a cure for their sons and for other parents fighting this awful disease.
With your help, we are hoping to raise donations for Danial and Mahan, as they are battling their ever-growing symptoms with Tay Sachs. The boys require 24/7 care. This includes cleaning, changing, feedings through J-Tubes, suctioning, and anything else you could imagine. Because Danial has been having increasing number of seizures, Mrs. Amani cannot work and must stay home at all times to monitor Danial, alongside Mahan. The small apartment they are currently living in has 6 stairs, so Mr. Amani hugs the boys and then carries them in and out of their wheelchair throughout their apartment. Because both Danial and Mahan have Tay Sachs, Mr. Amani cannot work during the day to cover their experiences (taking care of one teenager with Tay Sachs takes a village, taking care of two teenagers with Tay Sachs takes an army). Therefore, after Mr. and Mrs. Amani put their beautiful boys to bed, Mr. Amani begins his job as an Uber driver. For this reason, we ask for any donations possible to help Danial, Mahan, and their incredibly, loving and strong parents support themselves throughout this battle.
With these donations, The Amani’s are hoping to buy a car that is wheelchair accessible for both Danial and Mahan. They are in need of at-home hospital beds that will allow for sanitary cleaning and changing as well as new wheelchairs to support Danial and Mahan’s physical needs. Lastly, they are hoping that your donations can help them purchase a wheelchair ramp for their apartment.
All of your generous donations will be put towards Danial and Mahan’s daily care and living expenses. We are hoping that your donations will help bring a sense of relief to Mr. and Mrs. Amani as they strive to take care of their boys every day.
Please help us support the Amani Family as they work through the best path forward for these amazing boys, Danial and Mahan. Any amount of donation will go along way. Thank you so much!
The Amani Family have two sweet, loving brothers that are inseparable: Danial (16) and Mahan (12). Both, Danial and Mahan, suffer from an incredibly rare disease named Juvenile Tay Sachs. Although unable to speak and use their motor skills, the boys enjoy being around other children and form radiant smiles at the sound of their parent’s voices. This is a story of a family, facing difficult circumstances through no fault of their own, continuing to demonstrate the purest form of love.
Danial and Mahan grew up in a very loving and playful home in Iran. Danial lived a very normal childhood until the age of 3.5 when he started to lose his ability to hold toys, to stand up, to walk and talk. At that time, Danial’s mom was pregnant with Mahan. While his symptoms progressed, doctors in Iran were unable to figure out what was causing Danial’s regression. Mr. and Mrs. Amani began to live a parent’s worst nightmare—watching their beautiful baby boy unable to do the normal things he once could and not knowing why to stop it from progressing. They feared the same would happen to Mahan, which it did. Mahan’s symptoms similarly began to present at 3.5 years old. Prior to his symptoms, Mahan would come to every doctor’s appointment with Danial, answering every question doctors would ask about his big brother, most of the times with a funny sense of humor. Then one day, Mahan stopped talking. Eventually, one doctor in Iran took a biopsy of the boys and sent it to Johns Hopkins. Three months later, his parents received the diagnosis, one that no parent should ever live through. Juvenile Tay Sachs disease: an inherited disorder that progressively destroys nerve cells (neurons) in the brain and spinal cord. Both their sons had it and their symptoms would only worsen.
Due to the rarity of the disease and little information known about it, Danial and Mahan were denied insurance and medication coverage in Iran. Doing what any parent would do, Danial and Mahan’s parents packed their bags and left for Dubai to find work and get insurance and medication for their boys. Mr. Amani (Habib) worked as a Tour Guide so that he could learn English to be able to understand research on Tay Sachs and hopefully one day move his family to the United States. However, they were denied visas, 5 times. Refusing to give up fighting for his sons, Mr. Amani finally got in touch with The National Tay-Sachs and Allied Diseases Association (NTSAD) and received a visa with their help to attend a Tay Sachs conference in Orlando, Florida in 2016. One week later, researchers from Mass General, whom they met at the conference, invited the family to Boston and admitted Danial to Mass General Hospital for 45 days. Unfortunately, Danial got very sick during his stay and lost more than 10 kg. He eventually was discharged to UMass Memorial to regain his deteriorating strength back. Since then, Mr. Amani and his wife have been taking care of their boys with unconditional love, thankful that someone at NTSAD took a chance on them and grateful that the researchers they met at the conference in Orlando took a leap of faith with them.
Today, there is no cure for Tay Sachs. Danial and Mahan are now 16 and 12 years old and wheelchair bound. Throughout the years, they have had a gradual loss of vision and hearing, increasing muscle stiffness and restricted movements (spasticity), paralysis, deterioration of their cognitive processes (dementia and intellectual disability), and seizures. No medication can stop this disease from progressing but that has not stopped Mr. and Mrs. Amani from loving their boys like any other parent and striving to do anything they can to help find a cure for their sons and for other parents fighting this awful disease.
With your help, we are hoping to raise donations for Danial and Mahan, as they are battling their ever-growing symptoms with Tay Sachs. The boys require 24/7 care. This includes cleaning, changing, feedings through J-Tubes, suctioning, and anything else you could imagine. Because Danial has been having increasing number of seizures, Mrs. Amani cannot work and must stay home at all times to monitor Danial, alongside Mahan. The small apartment they are currently living in has 6 stairs, so Mr. Amani hugs the boys and then carries them in and out of their wheelchair throughout their apartment. Because both Danial and Mahan have Tay Sachs, Mr. Amani cannot work during the day to cover their experiences (taking care of one teenager with Tay Sachs takes a village, taking care of two teenagers with Tay Sachs takes an army). Therefore, after Mr. and Mrs. Amani put their beautiful boys to bed, Mr. Amani begins his job as an Uber driver. For this reason, we ask for any donations possible to help Danial, Mahan, and their incredibly, loving and strong parents support themselves throughout this battle.
With these donations, The Amani’s are hoping to buy a car that is wheelchair accessible for both Danial and Mahan. They are in need of at-home hospital beds that will allow for sanitary cleaning and changing as well as new wheelchairs to support Danial and Mahan’s physical needs. Lastly, they are hoping that your donations can help them purchase a wheelchair ramp for their apartment.
All of your generous donations will be put towards Danial and Mahan’s daily care and living expenses. We are hoping that your donations will help bring a sense of relief to Mr. and Mrs. Amani as they strive to take care of their boys every day.
Please help us support the Amani Family as they work through the best path forward for these amazing boys, Danial and Mahan. Any amount of donation will go along way. Thank you so much!
Organiser
Nadia Nikroo
Organiser
Boston, MA
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