Hope for Brooklyn
Donation protected
Help the Rex family continue their challenging stay in the United States.
Brooklyn Harper Rex was diagnosed with Systemic Juvenile Idiopathic Arthritis (SJIA) complicated by Macrophage Activation Syndrome (MAS), a mysterious and rare condition, at the tender age of one years old. Little is known about MAS except that it can kill within hours and that it tends to strike about 10 percent of children who have Systemic Juvenile Idiopathic Arthritis.
At 6 months old, Brooklyn started getting an urticaria like rash that would come and go, usually appearing in the afternoon and gone by the following morning. Then 3 weeks after her 1st birthday she began to get fevers around 40’C which continued for 40 days.
During this time we met with more than half a dozen specialists but it was still unknown as to the cause of the fevers and rash. She was tested for diseases such as Lymphoma, Leukemia, tumors, Lupus, as well as being treated for Kawasaki disease. Once she did not respond to treatment it was eventually suggested that Brooklyn be tested for HLH (Hemophagocytic Lymphohistiocytosis) through a bone marrow aspiration and lymph node biopsy, which came back positive for macrophage involvement. However, it didn’t explain the pain and inability to walk that Brooklyn was experiencing most days.
With researching further, there is a combination of HLH with juvenile arthritis called Macrophage Activation Syndrome, which is a rare life-threatening disease that has symptoms just like that of HLH. So the family made a decision to fly to Cape Town to meet with a pediatric rheumatologist who had some experience with this auto-inflammatory disease known as MAS. After looking through Brooklyn’s medical history and examining her, he confirmed that she had Systemic Juvenile Idiopathic Arthritis (sJIA) and the worst that he had seen in a child her age.
Along with her prescribed, first line, daily treatment of steroids and Ciclosporin, it was recommended that Brooklyn be put on chemotherapy immediately. Within 3 weeks Brooklyn’s blood results plummeted and she was taken off the chemo. The next option was to use a new generation treatment called biologics. Biologics are generally difficult to get and often times not covered by insurance because of the immense cost every month. However, biologics can be very effective in the treatment of Juvenile Arthritis as well as Macrophage Activation Syndrome.
In an attempt to try and see which biologic would stabilize Brooklyn, she had a massive allergic reaction that caused us to look for another opinion overseas. Brooklyn is now in a research program in the United States, where she contributes to the medical research of sJIA complicated by MAS (HLH) and her biologic is now being covered through an assistance program.
Brooklyn is currently on a daily biologic and has subsequently been put back on chemo to help control her overactive immune system. Without this treatment, she risks her body going into multi organ failure and could be potentially fatal.
We hope that our story encourages people, especially families dealing with rare diseases, to be brave and have hope when your little one becomes ill. You are their advocate. Have faith and be strong for them. It’s never an easy road but always know there are others out there that love you.
For those that would like to make a donation to the Hope for Brooklyn fund, please use the Official GoFundMe link on this page. Please also join us on Facebook where we share updates on Brooklyn’s journey with sJIA and MAS.
God Bless!
Brooklyn Harper Rex was diagnosed with Systemic Juvenile Idiopathic Arthritis (SJIA) complicated by Macrophage Activation Syndrome (MAS), a mysterious and rare condition, at the tender age of one years old. Little is known about MAS except that it can kill within hours and that it tends to strike about 10 percent of children who have Systemic Juvenile Idiopathic Arthritis.
At 6 months old, Brooklyn started getting an urticaria like rash that would come and go, usually appearing in the afternoon and gone by the following morning. Then 3 weeks after her 1st birthday she began to get fevers around 40’C which continued for 40 days.
During this time we met with more than half a dozen specialists but it was still unknown as to the cause of the fevers and rash. She was tested for diseases such as Lymphoma, Leukemia, tumors, Lupus, as well as being treated for Kawasaki disease. Once she did not respond to treatment it was eventually suggested that Brooklyn be tested for HLH (Hemophagocytic Lymphohistiocytosis) through a bone marrow aspiration and lymph node biopsy, which came back positive for macrophage involvement. However, it didn’t explain the pain and inability to walk that Brooklyn was experiencing most days.
With researching further, there is a combination of HLH with juvenile arthritis called Macrophage Activation Syndrome, which is a rare life-threatening disease that has symptoms just like that of HLH. So the family made a decision to fly to Cape Town to meet with a pediatric rheumatologist who had some experience with this auto-inflammatory disease known as MAS. After looking through Brooklyn’s medical history and examining her, he confirmed that she had Systemic Juvenile Idiopathic Arthritis (sJIA) and the worst that he had seen in a child her age.
Along with her prescribed, first line, daily treatment of steroids and Ciclosporin, it was recommended that Brooklyn be put on chemotherapy immediately. Within 3 weeks Brooklyn’s blood results plummeted and she was taken off the chemo. The next option was to use a new generation treatment called biologics. Biologics are generally difficult to get and often times not covered by insurance because of the immense cost every month. However, biologics can be very effective in the treatment of Juvenile Arthritis as well as Macrophage Activation Syndrome.
In an attempt to try and see which biologic would stabilize Brooklyn, she had a massive allergic reaction that caused us to look for another opinion overseas. Brooklyn is now in a research program in the United States, where she contributes to the medical research of sJIA complicated by MAS (HLH) and her biologic is now being covered through an assistance program.
Brooklyn is currently on a daily biologic and has subsequently been put back on chemo to help control her overactive immune system. Without this treatment, she risks her body going into multi organ failure and could be potentially fatal.
We hope that our story encourages people, especially families dealing with rare diseases, to be brave and have hope when your little one becomes ill. You are their advocate. Have faith and be strong for them. It’s never an easy road but always know there are others out there that love you.
For those that would like to make a donation to the Hope for Brooklyn fund, please use the Official GoFundMe link on this page. Please also join us on Facebook where we share updates on Brooklyn’s journey with sJIA and MAS.
God Bless!
Organizer and beneficiary
Darryn Rex
Organizer
Flower Mound, TX
Stuart Rex
Beneficiary
