Help Baby Aella Make It
Donation protected
Aella and Genevieve Storm, daughters of Angel Storm, are identical twins who were born prematurely on September 4, 2015. From the time they were in the womb, God had blessed these beautiful baby girls with the unique gift of being fighters who never give up and because of that, they became survivors at a very young age. After visiting the NICU multiple times every day for two months, Angel was ecstatic and relieved when she was able to finally show the girls where their real home was.
Just when she thought the worst was over, Angel had started to notice that Aella was suffering from a rash. After a skin biopsy and MRI, Aella was diagnosed with a very rare type of cancer called systemic Langerhans cell histiocytosis (LCH). Langerhans cells are a type of white blood cell that normally help the body fight infection. In LCH, too many Langerhans cells are produced and build up in certain parts of the body where they can form tumors or damage organs. Learn more about LCH here: http://www.histio.org/lchinchildren . Unfortunately, after being treated for just a short period of time, Aella’s body stopped responding to the treatment. The hospital said they would continue the treatment regardless, but there would be not much else that could be done to help Aella. Shortly after this news, Angel had begun to notice different symptoms appearing and suggested to the doctors that there was something else wrong outside of the LCH. The doctors ran more tests and diagnosed Aella with yet another very rare disease called Hemophagocytic Lymphohistiocytosis (HLH), a life-threatening immunodeficiency. Learn more about HLH here: https://www.cincinnatichildrens.org/service/h/hlh/about . The hospital that Aella was staying at in Florida is unable to treat for HLH, so Aella was taken to the Cincinnati Children’s Hospital, where she is now being treated for both HLH and LCH.
Angel's mom, Lisa, has been helping care for both babies since Aella's initial diagnosis. Since being admitted to the hospital on November 2, Aella has needed a caretaker with her 24/7. Genevieve has come along each day as well. Part of the magic of being a twin is that you can communicate with each other in a way that no one else can. You share your own language.
Being a twin is a wonderful blessing; the best thing that could happen to anyone. Every time Genevieve would enter the hospital room, Aella’s face would light up with happiness.
Due to a recent court hearing over a custody battle where the biological father of the twins unexpectedly decided to fight against Angel’s request to have Aella transferred to a hospital that would be able to help save her life, Genevieve was ordered to stay in Florida with the biological father while Aella receives the treatment she needs in Cincinatti to once again fight for her survival, forcing the twins to be separated indefinitely. Aella’s diseases could take many years to treat. Having to fight this battle without her sister, Angel made Aella a twin doll to make sure she doesn’t forget that she has an amazing twin sister who is still in her heart even though they are so many miles apart.
Aella has suffered tremendously, going through rounds of treatment after treatment and still finding no cure that will work for her. Currently, Aella has a port – a central line that pumps fluid into her heart – which is used for chemotherapy and for receiving daily medications. She is also hooked up to an IV through her port at all times. Aella needs a blood transfusion every other day. She has a rash everywhere. She suffers periods of pain that can onset at any time, causing her to scream very loudly. She has lost the hair on both sides of her head due to the chemotherapy. And the list goes on. Alongside enduring all of this, Aella is still an overall happy baby who loves to read, sing, play with loud toys, and Skype with people.
This journey has also been very hard on Aella’s mother, Angel. Angel served in the Army for six years, deploying to Iraq and subsequently Afghanistan as a DoD civillian. She has always been a very generous person who gives nothing less than her all to people in need, both loved ones and strangers. Angel is truly the definition of altruism. Now, Angel is fighting to save the life of her own child. When Aella was non-responsive to treatment, Angel sold her belongings in preparation to move anywhere that could provide treatment for Aella. Despite these difficult times, Angel still refuses to ever give up on Aella. She has always made sure that Aella is never alone for even a second. Angel has done the leg work when the doctors would not in order to ensure that her daughter stays alive. Aella needs her mom with her every step of the way, just like she always has, in order to push her to survive, especially with Genevieve no longer physically being in her life at the moment.
We have started this fund to help support Aella’s continuous, every day battle of fighting for her life and in hopes that Angel will never have to leave her side throughout it all. Medical bills are now at their all-time high while continuing to rise, and with very little belongings and no place to call home, both Aella and Angel could use all the help and support they can get. I hope and pray that we can help them both to achieve this goal, especially during the holidays where they will be alone in Cincinatti. I also hope and pray that we are all able to bring Aella the magic, joy and love that Christmas will bring the rest of us this year. If Aella could tell Santa what she wants this year, it would be to be with her sister and the rest of her family, to be healthy, and to live a long life outside of a hospital room. Just like every other person out there, Aella deserves the chance to live life without continual pain and to live outside of a hospital where she can experience all the extraordinary things this world has to offer. Thanks to this donation program, we have the opportunity to do all we can to try and make that happen for her. Thank you to all of you who will support baby Aella, even if all you can give is a prayer.
Just when she thought the worst was over, Angel had started to notice that Aella was suffering from a rash. After a skin biopsy and MRI, Aella was diagnosed with a very rare type of cancer called systemic Langerhans cell histiocytosis (LCH). Langerhans cells are a type of white blood cell that normally help the body fight infection. In LCH, too many Langerhans cells are produced and build up in certain parts of the body where they can form tumors or damage organs. Learn more about LCH here: http://www.histio.org/lchinchildren . Unfortunately, after being treated for just a short period of time, Aella’s body stopped responding to the treatment. The hospital said they would continue the treatment regardless, but there would be not much else that could be done to help Aella. Shortly after this news, Angel had begun to notice different symptoms appearing and suggested to the doctors that there was something else wrong outside of the LCH. The doctors ran more tests and diagnosed Aella with yet another very rare disease called Hemophagocytic Lymphohistiocytosis (HLH), a life-threatening immunodeficiency. Learn more about HLH here: https://www.cincinnatichildrens.org/service/h/hlh/about . The hospital that Aella was staying at in Florida is unable to treat for HLH, so Aella was taken to the Cincinnati Children’s Hospital, where she is now being treated for both HLH and LCH.
Angel's mom, Lisa, has been helping care for both babies since Aella's initial diagnosis. Since being admitted to the hospital on November 2, Aella has needed a caretaker with her 24/7. Genevieve has come along each day as well. Part of the magic of being a twin is that you can communicate with each other in a way that no one else can. You share your own language.
Being a twin is a wonderful blessing; the best thing that could happen to anyone. Every time Genevieve would enter the hospital room, Aella’s face would light up with happiness.
Due to a recent court hearing over a custody battle where the biological father of the twins unexpectedly decided to fight against Angel’s request to have Aella transferred to a hospital that would be able to help save her life, Genevieve was ordered to stay in Florida with the biological father while Aella receives the treatment she needs in Cincinatti to once again fight for her survival, forcing the twins to be separated indefinitely. Aella’s diseases could take many years to treat. Having to fight this battle without her sister, Angel made Aella a twin doll to make sure she doesn’t forget that she has an amazing twin sister who is still in her heart even though they are so many miles apart.
Aella has suffered tremendously, going through rounds of treatment after treatment and still finding no cure that will work for her. Currently, Aella has a port – a central line that pumps fluid into her heart – which is used for chemotherapy and for receiving daily medications. She is also hooked up to an IV through her port at all times. Aella needs a blood transfusion every other day. She has a rash everywhere. She suffers periods of pain that can onset at any time, causing her to scream very loudly. She has lost the hair on both sides of her head due to the chemotherapy. And the list goes on. Alongside enduring all of this, Aella is still an overall happy baby who loves to read, sing, play with loud toys, and Skype with people.
This journey has also been very hard on Aella’s mother, Angel. Angel served in the Army for six years, deploying to Iraq and subsequently Afghanistan as a DoD civillian. She has always been a very generous person who gives nothing less than her all to people in need, both loved ones and strangers. Angel is truly the definition of altruism. Now, Angel is fighting to save the life of her own child. When Aella was non-responsive to treatment, Angel sold her belongings in preparation to move anywhere that could provide treatment for Aella. Despite these difficult times, Angel still refuses to ever give up on Aella. She has always made sure that Aella is never alone for even a second. Angel has done the leg work when the doctors would not in order to ensure that her daughter stays alive. Aella needs her mom with her every step of the way, just like she always has, in order to push her to survive, especially with Genevieve no longer physically being in her life at the moment.
We have started this fund to help support Aella’s continuous, every day battle of fighting for her life and in hopes that Angel will never have to leave her side throughout it all. Medical bills are now at their all-time high while continuing to rise, and with very little belongings and no place to call home, both Aella and Angel could use all the help and support they can get. I hope and pray that we can help them both to achieve this goal, especially during the holidays where they will be alone in Cincinatti. I also hope and pray that we are all able to bring Aella the magic, joy and love that Christmas will bring the rest of us this year. If Aella could tell Santa what she wants this year, it would be to be with her sister and the rest of her family, to be healthy, and to live a long life outside of a hospital room. Just like every other person out there, Aella deserves the chance to live life without continual pain and to live outside of a hospital where she can experience all the extraordinary things this world has to offer. Thanks to this donation program, we have the opportunity to do all we can to try and make that happen for her. Thank you to all of you who will support baby Aella, even if all you can give is a prayer.
Organizer
Janet Shannon
Organizer
Cincinnati, OH
