As parents we will do anything to protect our kids, but sadly there are some things we can't protect them from. That was the harsh reality good friends of mine recently learned in regards to their beautiful 4 year old boy, AJ, who was recently diagnosed with multiple tumors on his brain- in areas that make surgery impossible. I am writing this story to build awareness and help this amazing family get through what will be the most difficult time of their lives .
AJ was your typical 4 year old: running, jumping and wearing hs mom and dad out with his boundless energy and enthusiasm for life. So when he started having a problem with his vision they took him to his pediatrician, who scheduled a visit with an developmental ophthalmologist and life went on as normal. They never suspected that this was just the beginning of something much bigger.
Before their visit with the ophthalmologist they went on a trip to Disney World, where things suddenly took a turn for the worse. AJ's coordination and ability to walk became impaired so they cut their trip short and rushed him back home to his pediatrician in Tennessee. His doctor sent him to East Tennessee Children's Hospital (Knoxville),where they did CT scan and discovered the multiple tumors. Needless to say his parents were beyond devastated over what can only be described as every parents worst nightmare.
Since the diagnosis AJ's parents, as well as friends and family, have been working no-stop to raise awareness about this silent killer and help AJ try to beat this. It is an uphill batte for him, as the tumors are inoperable and he is too young for radiation. In addition, since they are benign tumors the chemotherapy treatments do not always work. He will take chemo treatment for the next year in the hopes of stopping the tumor from progressing. Although there are rare instances where chemo works on this type of tumor it IS rare and chemotherapy is more of a band-aid until he is old enough to try radiation. AJ has also lost mobility on his left side, requiring a special chair as he can not use his left hand to steer a traditional wheelchair. It is frustrating for such an active boy to now be limited in his activities, but AJ and his family remain optimistic- this is not a time for pity, but a time for hope and faith.
Needless to say his mom and dad, 2 of the most extraordinary people I know, are trying to stay positive in the face of this battle. In addition to AJ they also have an older boy, Vadin and little girl, Gia, so saying they are stretched to the limit emotionally and financially is an understatement. There are only so many hours in the day and insurance only covers so much.
What they need more than anything is support, love and prayers, so please visit their Prayers For AJ Facebok page, where you will get the full story and daily updates and videos of this boy who is ALWAYS smiling despite his circumstances. We also encourage you to share his page with your friends and family, as their is strength in numbers. You can also follow and support AJ on Twitter at #Prayers4AJCucksey. In addition, anyone who wishes to help can visit AJ's Fundraising page to help his parent with the medical expenses- any donation, whether it's $5 or $100, is greatly appreciated.
Lastly, on January 31st there will be a Songs For AJ Fundraiser from 12-8PM in upstate NY at Eagles Club, 80 Main Street, SFG, NY 12804. There will be food, music, raffles, a 50/50 raffle, auctions and items for sale. Tickets are $10 for adults and $5 for children but if you can't go please try to make a donation, which can be done anonymously at any TD Bank. Tickets can be purchased at Hometown Smoothies, 14 Ridge Street, Glenn Falls, NY 12801. For any questions or more information you can contact either Nina Albanese-Payne (518)338-8157 or Sherri Pattee (518)796-3950/798-8281.
Please, take a moment to learn more about this condition, spread awareness and say a prayer for this brave little warrior. This is a fight no child should fight alone. Show your support and let him know he has a whole army behind him.
AJ was your typical 4 year old: running, jumping and wearing hs mom and dad out with his boundless energy and enthusiasm for life. So when he started having a problem with his vision they took him to his pediatrician, who scheduled a visit with an developmental ophthalmologist and life went on as normal. They never suspected that this was just the beginning of something much bigger.
Before their visit with the ophthalmologist they went on a trip to Disney World, where things suddenly took a turn for the worse. AJ's coordination and ability to walk became impaired so they cut their trip short and rushed him back home to his pediatrician in Tennessee. His doctor sent him to East Tennessee Children's Hospital (Knoxville),where they did CT scan and discovered the multiple tumors. Needless to say his parents were beyond devastated over what can only be described as every parents worst nightmare.
Since the diagnosis AJ's parents, as well as friends and family, have been working no-stop to raise awareness about this silent killer and help AJ try to beat this. It is an uphill batte for him, as the tumors are inoperable and he is too young for radiation. In addition, since they are benign tumors the chemotherapy treatments do not always work. He will take chemo treatment for the next year in the hopes of stopping the tumor from progressing. Although there are rare instances where chemo works on this type of tumor it IS rare and chemotherapy is more of a band-aid until he is old enough to try radiation. AJ has also lost mobility on his left side, requiring a special chair as he can not use his left hand to steer a traditional wheelchair. It is frustrating for such an active boy to now be limited in his activities, but AJ and his family remain optimistic- this is not a time for pity, but a time for hope and faith.
Needless to say his mom and dad, 2 of the most extraordinary people I know, are trying to stay positive in the face of this battle. In addition to AJ they also have an older boy, Vadin and little girl, Gia, so saying they are stretched to the limit emotionally and financially is an understatement. There are only so many hours in the day and insurance only covers so much.
What they need more than anything is support, love and prayers, so please visit their Prayers For AJ Facebok page, where you will get the full story and daily updates and videos of this boy who is ALWAYS smiling despite his circumstances. We also encourage you to share his page with your friends and family, as their is strength in numbers. You can also follow and support AJ on Twitter at #Prayers4AJCucksey. In addition, anyone who wishes to help can visit AJ's Fundraising page to help his parent with the medical expenses- any donation, whether it's $5 or $100, is greatly appreciated.
Lastly, on January 31st there will be a Songs For AJ Fundraiser from 12-8PM in upstate NY at Eagles Club, 80 Main Street, SFG, NY 12804. There will be food, music, raffles, a 50/50 raffle, auctions and items for sale. Tickets are $10 for adults and $5 for children but if you can't go please try to make a donation, which can be done anonymously at any TD Bank. Tickets can be purchased at Hometown Smoothies, 14 Ridge Street, Glenn Falls, NY 12801. For any questions or more information you can contact either Nina Albanese-Payne (518)338-8157 or Sherri Pattee (518)796-3950/798-8281.
Please, take a moment to learn more about this condition, spread awareness and say a prayer for this brave little warrior. This is a fight no child should fight alone. Show your support and let him know he has a whole army behind him.