My son Brendon is an extraordinary self-taught, self-motivated piano player who has also learned to play other instruments, such as the alto sax to name one.  His goal is to become a composer of music for movies and games and one day dreams to be a great composer like his favorite Hans Zimmer.   He is a straight “A”, Honor Roll student and has been for years.  

Brendon has been battling Sickle Cell Beta Thalassemia disease since birth and is now 16 years old.  He has had years of excruciating pain, multiple hospitalizations and has had two of his organs surgically removed, his gall bladder at 4 years old and his spleen at 11 years old.  In researching our son’s illness and searching for ways we can help him fight this disease we I sought genetics counseling.  Maybe having another child and saving the blood cord would save Brendon. Since SBetaThal is a genetic disease we were advised that the possibilities of the next child having the same disease would be slim to none.  So we tried and 14 weeks into my pregnancy Aiden, Brendon’s brother was diagnosed with exactly the same blood disorder.  We would not give up and we would continue finding ways to cure our boys.  Both Brendon and Aiden (who is now 8, also battling Sickle Cell Beta Thalassemia Disease and waiting for a bone marrow donor match for transplant) would undergo monthly phlebotomy and blood transfusions.  Just a few years ago Brendon was fortunate enough to find a bone marrow donor and received a mismatched unrelated bone marrow transplant September 10th, 2014 at Holtz Children’s Hospital at Jackson Memorial in Miami, Florida.  We were all filled with excitement, anxiety and fear because of the risks that we were taking with this.  Well, all of our fears came to light on the day of the transplant.  Approximately 10-15 minutes after they began the transplant he complained of not feeling well and bad stomach cramps. Within seconds he was unresponsive and at that moment he fell into my arms!  My son was gone.  The doctors worked fast and to our surprise and faith he was resuscitated.  He is a true fighter and as they were stabilizing him I (his mom) told him “Brendon you cannot leave me, don’t leave me”.  He answered “I am not going anywhere”.  He does not remember what happened that day and how we lost him.

It has been a long and trying journey for us all.  Brendon and I were separated from our home, family and life for approximately six months while being hospitalized and our extended stay at the Ronald McDonald House of South Florida.  We were hours away from home and our family.  We looked forward to weekends when dad (Alex) and brother (Aiden) would come and visit as well as grandma and grandpa.  This was emotionally, physically and financially stressful for us all.  The preparation for Brendon to come home was another battle.  He is in need of a special diet, must be in a clean and sterile environment, extensive daily medication and weekly appointments to make sure he well.  All of our lives changed.  Once we were at the point of seeing some relief I lost my job of 11 years and within days Brendon was once again hospitalized.  My husband is barely working since he is caring for our eight year old and taking him to his doctor visits, bills piling up and funds are running out.  At this point it felt as if our family was falling apart.  Fighting for our boy’s health, fighting over bills, trying to keep our home in tack is very hard.   

Brendon has developed grade 4 GVHD (Graft vs Host Disease) in his gut which could have been fatal if not treated immediately and if his body does not respond to treatment.  We have been undergoing excellent treatment back at Holtz Children’s Hospital in Miami and after a month he is slowly showing improvement. 

We continue to keep our faith and I know that the MAN above has a wonderful plan for Brendon and us all.  Brendon’s 1st goal is to fight to get better so that he could be there for his brother Aiden and help him through his transplant and his 2nd goal is to be well enough to go to college and become a Grammy winning music composer.  Our battle has just begun.   Please help us keep our family afloat, together and healthy.  Any assistance will be greatly appreciated and heaven sent.

We will be posting updates on our Facebook Page: https://www.facebook.com/BrendonsSong