Lewisham girl, Miai shows resilience in the face of Sickle Cell Anaemia

BY CALUM FRASER
calum@slpmedia.co.uk

Sometimes the highest dosage of morphine cannot ease eight-year-old Miai’s pain.

The Lewisham girl has sickle cell anemia, which can suddenly strike her down with crippling cramps and aches.

She often relies on blood transfusions as a form of treatment, but medical chiefs say blood stocks of her rare type are running low and are making a plea for black Londoners to donate blood.

The rare blood group is called Ro, which is more common in black people, and there is not enough to meet demand.

Lisa Phillip, Miai’s mother, said: “People often make jokes about the guilt that goes hand-in-hand with parenthood.

“Imagine how this guilt is multiplied when you know you’re responsible for your child’s ill health.

When even the maximum morphine dosage is doing nothing to ease the pain, when you’re supposed to be your child’s rock and inside you’re at your lowest point.”

The pair, who live in Ladywell, try to manage the condition with pain killers and avoid hospital trips if they can.

But still Miai has had to have six blood transfusions.

The 40-year-old said: “Living with a condition that you know can cause premature mortality is psychologically traumatizing, and because sickle cell affects the blood, it’s an invisible disability.

“When Miai has a sickle cell crisis, it usually starts with pain in her joints and increasingly in her chest. The pain is unbearable and can be very hard to manage as it’s often felt deep into the bone. It can last days or weeks.”

Lisa has had to tailor her life to her daughter’s condition, working from home, where she schools Miai.

When planning a holiday she tries not to be on a flight that last more than two hours.

Miai and Lisa were born in South London but their family roots go back to the Caribbean island, Carriacou.

To take the nine-hour flight there, they need on-board oxygen.

Sickle cell anemia is a disease where red blood cells become disfigured and rigid.

Sicklers are prone to bacterial infections and strokes and their life expectancy is between 40 and 60.

Lisa said: “My daughter is one of the most amazingly bright, resourceful and resilient little girls I have ever met. In many ways, her strength surpasses my own.

“She writes her own rules and does not allow the condition to define her. She has taught me not to be afraid.

We all have our crosses to bear and battles to face and she faces her condition head on.”

Over the last three years, there has been an 80 per cent increase in demand for Ro blood from London hospitals.

The increase is driven by a growing number of people with sickle cell disease, the most common and fastest-growing genetic disorder in the UK.

London’s blood stock holding units are now being asked for 3,966 units every month.

On Friday, July 20 Lisa was at the Summer of Saving Lives event in Catford, at the St Laurence Centre. Iesha Jackson became a new donor at a previous event at the Catford centre.

She said: “I was absolutely petrified of needles, but having lost a family friend through sickle cell disease it seemed right to put my fears to the side to help others.

“Everyone was really friendly and helpful. After giving blood, I received a text telling me that my blood had been dispatched and was on its way to a hospital which was incredibly exciting.

I also discovered that both me and my partner are O Positive with the Ro subgroup.”

To register as a blood donor, visit www.blood.co.uk.