Relief in a time of grief for the Ferreira family

We thank you for your support during this difficult time. We ask that you pray over the Ferreira family and share this link in hopes of coming together to help shoulder the burden.

The day Alex was born his parents Moises and Maria and his older siblings Alessandra and Albertson were elated. Here they had this beautiful blue/green eyed joyful baby and they looked forward to watching him learn and grow. Four months in their joy became fear when his mother noticed a bruise on his shin and then a week later a bruise on his arm.

 

Maria immediately had flashbacks to when she was 10 years old and she would see similar bruises on her little brother, Joao. Joao was a lively 23-month-old who loved feeding the family’s chickens. One day when running back and forth from the house out to the chickens, Joao tripped over a threshold and fell on his face biting and puncturing his bottom lip on the fall. His mother immediately sought medical attention for the uncontrolled bleeding, but she was simply instructed to apply a warm compress. Joao passed away two days later from the blood loss caused by his lip wound.

 

Due to the traumatic memories of her baby brother’s tragic passing Maria immediately took Alexandre to the pediatrician for his bruises. When the pediatrician dismissed her and informed her that this was normal, and some cream would help with her son’s bruising she knew she needed a second opinion. She then went to another pediatrician who took one look at Alex and said, “He is hemophiliac, and he is going to die” (there is something to be said here about the Brazilian medical system back in the 1980’s). After some exchange of words between said doctor and Moises some tests were run on Alex, and the next day the results were positive for Severe Hemophilia type A. Thus, began the Ferreira’s journey to learn about this hereditary blood disorder and find treatment for Alex.

 

The Ferreira’s and Alex quickly learned that Hemophilia is a rare genetic blood disorder where the blood lacks the proper proteins—or factor VIII in Alex’s case—that instruct the blood to form a clot. Due to this, clots cannot properly form in response to a cut or injury thus leading to constant and difficult to control bleeding. In addition, bleeding can occur in joints after an injury or sometimes for no obvious reason. The bleeding into joints can cause pressure in said area leading to severe pain, swelling, deformity, and possibly disability of that joint. It became clear that Alex would have to be extra careful even just doing regular everyday activities.

 

While there is no cure for hemophilia, there is treatment when a bleed or injury occurs, and that entails an infusion (via an IV) of factor VIII. In Curitiba, Brazil Factor VIII was not readily available, so whenever Alex had a bleed he would be rushed to the hospital where he would have to wait about 8 hours for the Factor VIII to arrive from Sao Paulo. Due to the lack of proper treatment, when Alex was 20 months old Moises and Maria decided to move their family to the U.S.—particularly close to Boston—where they had discovered Alex would receive the best medical treatment in the world.

 

Soon after they arrived to Cape Cod despite their utmost care, toddler Alex fell out of bed one day and hit his head. A hematoma soon developed, and he was taken to Cape Cod Hospital and the emergently sent to Boston Children’s Hospital via ambulance. Once arrived he immediately received factor VIII and his hematoma began to shrink. Alex was set up with routine visiting nurses at home, as well as a personal teacher’s aide at school to always ensure his safety. The Ferreira’s knew then that they had made the right decision with their move, as they finally had easy access to his medication. That ease, however, was short lived.

 

When Alex was 6 years old his medical team started to have concerns about him losing his baby teeth. While this may seem like a routine part of everyone’s childhood, nothing with Alex was routine—as simply losing one baby tooth could lead to uncontrollable bleeding. Add to this that the year prior Alex’s body had developed an inhibitor to the factor VIII infusions which essentially meant that the treatment was no longer working to help his blood clot. His medical team knew that Alex would need to have all 16 of his baby teeth removed surgically, but the risk of bleeding was too high .as there was now no proven treatment for Alex. The team met regularly with Alex and his parents to discuss medication alternatives and test their effectiveness on Alex’s bleeds, finally a year later they discovered that Alex could be treated with a medication called FEIBA and another called Novo 7.

 

Years went by, and while they were never easy and while Alex was in constant pain, he grew to be a funny, lovable, and charismatic man. Even though most of his time was spent in hospitals, and in pain—rather than doing normal teenage/twenty something activities—he always brought a positive energy wherever he went, and people were naturally drawn to him, his sense of humor, and artistic talent.

 

When Alex was 23, he began having issues with his right knee. Years of joint bleeds had taken their toll and Alex had no cartilage left, causing his knee bones to rub against each other. Needless to say, the pain was excruciating to an active young man. At this point Alex was getting sick and tired of his condition, and just wanted to live a normal life, so he hid the fact that his knee was immensely swollen and painful until he could no longer take it. The inevitable truth was that he would need a total knee replacement. While this is a traumatic and extensive surgery on anyone, the hemophilia added a whole new level of severe risks. And so, began the 14 months of meetings to decide how the procedure would be done, as well as treatments to optimize Alex’s body for the procedure.

 

In May 2013 Alex underwent a right total knee replacement, and things went great! He could finally walk normally again! However, this peak was once again short-lived as a few months later an infection developed in the right knee. Alex had numerous washouts and surgical debridement’s preformed, however the infection became so severe, and life threatening that discussions were made to amputate his right leg or risk losing his life. Being hospitalized for 3 months, a final effort to save his leg was made, but this involved removing Alex’s artificial knee and placing an antibiotic spacer (or placeholder) deeming it difficult for Alex to walk or bend his leg. Thankfully the infection finally succumbed to treatment.

 

On November 13, 2021 the Ferreira’s worst nightmare occurred. Ever since his initial diagnosis was made when he was 4 months old, it was stressed repeatedly that Alex had to be extremely careful to never injure his head, as this could result in a lethal brain bleed. However, on that Saturday night Alex was walking at home with his latest masterpiece in hand when his knee gave out leading Alex to fall and hit his head. Moises and Maria rushed to his side as he agonized in pain and was taken to Cape Cod Hospital via ambulance. Shockingly, Alex was cleared to go home hours later. The next morning was a Sunday—Alex spoke to his parents but stated he was tired from spending majority of the night at the hospital and said he would stay home from church to catch up on sleep. When his parents returned from church, they found Alex unresponsive, so he was once again rushed to the emergency room where it was discovered Alex had a massive brain bleed. He was intubated and med flighted to Beth Israel Deaconess Medical Center in Boston for emergent surgery.

 

The Ferreira’s thought they were out of the woods, but sadly this wasn’t so. Two days later they were asked to return to the hospital after visiting hours had ended as Alex had a decline in neurological status, and a head CT showed a new bleed in his brain that was inoperable. They were told this new bleeding was causing so much pressure and swelling to Alex’s brain that he was having seizures and would soon die. What the medical team didn’t account for was Alex’s gall, and the fact that he is indeed a fighter. He shocked us all when he began to wake up and again gain strength. While he was not as active as he was days prior, he was showing improvement. However due to the hemophilia his brain once again started bleeding on December 8 and while Alex had always been a fighter, his body could no longer keep at the battle. On Thursday, December 9th Alex took his last breath and went to live with the Lord.

 

We remember Alex for all of his positivity despite what life had handed him; he suffered daily without a complaint to be heard. He made our world more beautiful with his art, and laughter. God decided it was Alex’s time and he needed someone to help design the beautiful colors of every sunset, so he took him back as he was only ours to be borrowed.