After Losing Their Daughter To Sickle Cell Disease, One Family Hopes To Help Others Fight It By Urging Blood Donations
BALTIMORE (WJZ) -- Life for the Engrams is a bit quieter now; the quiet you never used to.
Deanna Engram misses her first-born daughter, Bobbi Engram, every single day.
"She was a true warrior in every sense of the word," Deanna tells WJZ.
It has been three years since the 20-year-old Towson University honors student lost her young, vibrant life to Sickle Cell Disease.
Despite numerous trips to the hospital, Bobbi was a zealous reader and talented writer, who was studying journalism. She had sky-high dreams of owning her own publishing company.
The devastating loss was a test of the family's faith.
"We all walk by faith, and we all trust God and what His will was, but we still had to go through losing our daughter, their sister, and just such a young, beautiful person," said her father, Bobby.
Bobbi's brother, Trey, misses having his big sister around.
"She was a just a vibrant spirit," Trey said. "She was always making sure you were good and checking on you."
Bobbi's passing has been an adjustment for the entire family.
"As a family, it took a lot of growth for us to be able to sit here and be able to even have this conversation, said Deanna.
Each day, the Engrams are bringing Bobbi Simone Engram's legacy to life.
"We always told her there was purpose for her pain," Deanna said.
Bobbi was life's soundtrack for her family now silenced by a loss they say could have been prevented.
"When you look at her, you would never be able to tell anything was wrong. That is why we're trying to attack this -- because it's a silent killer," said Bobby.
Sickle Cell Anemia is an inherited blood disorder. It causes normally round blood cells to form like crescent moons or sickles.
It's a silent, constant battle for a normal life.
"What people don't realize is over the course of their [sickle cell patients] life it really has a negative toll on the internal organs so [you have] vital organs that lack blood supply on a regular basis," Bobby explained.
Sickle cells block proper blood flow and oxygen to the body. It guarantees recurring episodes of bone-crushing pain throughout the body-- that mandates a trip to the hospital. That is the only way sickle cell patient truly can get relief.
"They compare it to labor pain," Deanna said.
Homeopathic therapies like massage and aromatherapy can comfort patients, but there is no cure for sickle cell.
Sickle cell pain escalates quickly," Bobby described. "So if you don't stop the pain -- it's going to continue to escalate. We're just trying to educate people to say when you go into the hospital to say you need this level of medication."
That's why blood transfusions are vital. Deanna tells WJZ fresh units of blood kept Bobbi with her family five months longer.
According to the American Red Cross, every two seconds there is someone in our country in need of blood.
While African-American blood is the best match for patients, O negative – a blood type anyone can have—can also help.
"For sickle cell patient's blood is imperative," Deanna said. "It's truly the lifeline."
The Bobbi Engram Foundation hopes its new partnership with the American Red Cross will increase the flow of donors. With a current detrimental nationwide blood shortage, the Immunohematology Reference Lab is the heart of the operation.
If you donate blood anywhere in our region, chances are it ends up in the IRL for testing.
"We are looking for donors of African descent to fill all of our vast number of patient orders for our local hospitals and the surrounding areas that have sickle cell anemia," explained Debi Giardina who is the Director of the IRL for the American Red Cross, Greater Chesapeake and Potomac Blood Services Region.
Sickle cell mostly impacts African Americans. One out of every 365 Black or African-American babies have the disease. One out of every 13 African-American babies carry the trait for it.
When you donate blood and self-identify as African-American, it is tagged with a blue ticket that indicates your blood can be tested to assist a sickle cell patient.
Deanna says transfusions make all the difference.
"They are vibrant afterwards. They can do things that they could not do before," she said.
Bobby, a former wide receiver and current tight ends coach for the Ravens, stands alongside his family, leading them to a new kind of victory. They have no time to waste as their youngest daughter, Phoebe tragically battles sickle cell disease as well.
She describes painful, tough days at schools as an inescapable part of her daily battle.
"A bad day [for me] is like even if it's like the sunniest day and I hear kids laughing and playing outside it's like a thunderstorm for me," Phoebe shared. "I'm stuck inside and having all types of emotions and not feeling like my normal self, so it makes me sad."
It's a thunderstorm Phoebe can only escape with constant medication and transfusions.
"As a parent, it's really hard to watch your child in pain and there's absolutely nothing you can do," Deanna said.
When asked why the family feels sickle cell is not widely discussed, Bobby shared this: "I just think in our country it's a Black and Brown disease. It's a minority disease. So we are just trying to do things within our own community first, like we all have to kind of step up. But we need other people as well to come a long side us."
With their unwavering faith and Bobbi's blessing, the Engrams will forge ahead for other families facing the same diagnosis.
"I never wanted Bobbi's life to be forgotten," Deanna said. "Any opportunity that we get to shine the light on sickle cell disease and to share her legacy of love is a gift."
The Bobbi Engram Foundation is hosting a 5K on November 6, 2021 to continue its mission of raising awareness and saving lives.
Want to donate blood? Click here to learn where to donate. You can also donate or volunteer with the Bobbi Engram Foundation.