BALTIMORE (WJZ) — Life for the Engrams is simply a spot quieter now; the quiescent you ne'er utilized to.
Deanna Engram misses her first-born daughter, Bobbi Engram, each azygous day.
“She was a existent warrior successful each consciousness of the word,” Deanna tells WJZ.
It has been 3 years since the 20-year-old Towson University honors pupil mislaid her young, vibrant beingness to Sickle Cell Disease.
Despite galore travel to the hospital, Bobbi was a zealous scholar and talented writer, who was studying journalism. She had sky-high dreams of owning her ain publishing company.
The devastating nonaccomplishment was a trial of the family’s faith.
“We each locomotion by faith, and we each spot God and what His volition was, but we inactive had to spell done losing our daughter, their sister, and conscionable specified a young, beauteous person,” said her father, Bobby.
Bobbi’s brother, Trey, misses having his large sister around.
“She was a conscionable a vibrant spirit,” Trey said. “She was ever making definite you were bully and checking connected you.”
Bobbi’s passing has been an accommodation for the full family.
“As a family, it took a batch of maturation for america to beryllium capable to beryllium present and beryllium capable to adjacent person this conversation, said Deanna.
Each day, the Engrams are bringing Bobbi Simone Engram’s bequest to life.
“We ever told her determination was intent for her pain,” Deanna said.
Bobbi was life’s soundtrack for her household present silenced by a nonaccomplishment they accidental could person been prevented.
“When you look astatine her, you would ne'er beryllium capable to archer thing was wrong. That is wherefore we’re trying to onslaught this — due to the fact that it’s a soundless killer,” said Bobby.
Sickle Cell Anemia is an inherited humor disorder. It causes usually circular humor cells to signifier similar crescent moons oregon sickles.
It’s a silent, changeless conflict for a mean life.
“What radical don’t recognize is implicit the people of their [sickle compartment patients] beingness it truly has a antagonistic toll connected the interior organs truthful [you have] captious organs that deficiency humor proviso connected a regular basis,” Bobby explained.
Sickle cells artifact due humor travel and oxygen to the body. It guarantees recurring episodes of bone-crushing symptom passim the body– that mandates a travel to the hospital. That is the lone mode sickle compartment diligent genuinely tin get relief.
“They comparison it to labour pain,” Deanna said.
Homeopathic therapies similar massage and aromatherapy tin comfortableness patients, but determination is nary cure for sickle cell.
Sickle compartment symptom escalates quickly,” Bobby described. “So if you don’t halt the symptom — it’s going to proceed to escalate. We’re conscionable trying to amended radical to accidental erstwhile you spell into the infirmary to accidental you request this level of medication.”
That’s wherefore humor transfusions are vital. Deanna tells WJZ caller units of humor kept Bobbi with her household 5 months longer.
According to the American Red Cross, each 2 seconds determination is idiosyncratic successful our state successful request of blood.
While African-American humor is the champion lucifer for patients, O antagonistic – a humor benignant anyone tin have—can besides help.
“For sickle compartment patient’s humor is imperative,” Deanna said. “It’s genuinely the lifeline.”
The Bobbi Engram Foundation hopes its caller concern with the American Red Cross volition summation the travel of donors. With a existent detrimental nationwide humor shortage, the Immunohematology Reference Lab is the bosom of the operation.
If you donate humor anyplace successful our region, chances are it ends up successful the IRL for testing.
“We are looking for donors of African descent to capable each of our immense fig of diligent orders for our section hospitals and the surrounding areas that person sickle compartment anemia,” explained Debi Giardina who is the Director of the IRL for the American Red Cross, Greater Chesapeake and Potomac Blood Services Region.
Sickle compartment mostly impacts African Americans. One retired of each 365 Black oregon African-American babies person the disease. One retired of each 13 African-American babies transportation the trait for it.
When you donate humor and self-identify arsenic African-American, it is tagged with a bluish summons that indicates your humor tin beryllium tested to assistance a sickle compartment patient.
Deanna says transfusions marque each the difference.
“They are vibrant afterwards. They tin bash things that they could not bash before,” she said.
Bobby, a erstwhile wide receiver and existent choky ends manager for the Ravens, stands alongside his family, starring them to a caller benignant of victory. They person nary clip to discarded arsenic their youngest daughter, Phoebe tragically battles sickle compartment illness arsenic well.
She describes painful, pugnacious days astatine schools arsenic an inescapable portion of her regular battle.
“A atrocious time [for me] is similar adjacent if it’s similar the sunniest time and I perceive kids laughing and playing extracurricular it’s similar a thunderstorm for me,” Phoebe shared. “I’m stuck wrong and having each types of emotions and not feeling similar my mean self, truthful it makes maine sad.”
It’s a thunderstorm Phoebe tin lone flight with changeless medicine and transfusions.
“As a parent, it’s truly hard to ticker your kid successful symptom and there’s perfectly thing you tin do,” Deanna said.
When asked wherefore the household feels sickle compartment is not wide discussed, Bobby shared this: “I conscionable deliberation successful our state it’s a Black and Brown disease. It’s a number disease. So we are conscionable trying to bash things wrong our ain assemblage first, similar we each person to benignant of measurement up. But we request different radical arsenic good to travel a agelong broadside us.”
With their unwavering religion and Bobbi’s blessing, the Engrams volition forge up for different families facing the aforesaid diagnosis.
“I ne'er wanted Bobbi’s beingness to beryllium forgotten,” Deanna said. “Any accidental that we get to radiance the airy connected sickle compartment illness and to stock her bequest of emotion is simply a gift.”
The Bobbi Engram Foundation is hosting a 5K connected November 6, 2021 to proceed its ngo of raising consciousness and redeeming lives.