Suffering from rare bone disorder, Amna's dream is to be as independent as possible
Doctors did not know the type of her disease but they were sure that Amna would not survive long. Photo: Lubna Hammad
Sixteen-year-old Amna has a wish: to be as independent as possible. Probably that is the reason she loves her electric wheelchair more than anything on the planet. This wheelchair gives her freedom to move around, making her a little independent.
Amna is suffering from a rare disease of bones called Osteogenesis Imperfecta, commonly known as brittles bones. Osteogenesis Imperfecta (OI) is a genetic bone disorder characterised by fragile bones that can break easily – even a sneeze, cough or poor handling of the patient can break their bones.
Amna was born to a Pakistani British couple in 2002. When she was handed over to her mother, she looked like any other normal and healthy baby. Doctors were satisfied but Lubna Hammad had a feeling that there was something seriously wrong with her newly born baby.
“Amna cried a lot that first night, so I asked doctors to check her again. The next day they did a thorough examination and sent the results to Great Ormond Street Hospital,” she recalls.
“They then took us into a separate room and explained to us that she had a rare condition of Osteogenesis Imperfecta. We were shocked and devastated.”
According to the doctors and the geneticist, Amna had a "New Mutation". Photo: Lubna Hammad
Doctors did not know the type of her disease but they were sure that Amna would not survive long. Her condition was severe. She had gotten fractures while she was still in the womb. She sustained somehow, but two days after her birth she had gotten new fractures due to the delivery and handling.
“Our baby was in so much pain and suffering and there wasn’t a cure. We never felt so helpless. It took us a long time to understand this, but she was here…she was ours. She was our gift from God and this is how it was meant to be. She was special.”
No one on either side of the families had this disease. According to the doctors and the geneticist, Amna had a "New Mutation".
Amna lives in London with her family. Though this disease is making her bones weaker and weaker, but her confidence and self-esteem remains firm and strong.
“I wouldn’t change my condition. I am meant to be this way. But it’s my personality that makes me who I am,” Amna shares.
Her care is limited to only a few people. Her mother is her main caregiver. Every day is different for Amna and her family. Their days and nights depend on how Amna is feeling. They don’t plan ahead because Amna can fracture any time.
Amna lives in London with her family. Though this disease is making her bones weaker and weaker, but her confidence and self-esteem remains firm and strong. Photo: Lubna Hammad
“When Amna fractures, we don’t take her to the hospital because there isn’t anything they can do for her,” explains Hammad. Besides x-rays, which she can’t have too many of, and neither plasters, the family relieves her pain and manages the fractures at home just by making her stable and comfortable, or sometimes doing a light bandage. “We only take her to the hospital if we can’t manage at home.”
There are a lot of things Amna can do and lots of other things she can’t. It all depends on how she is doing that day. Sometimes she can eat herself and sometimes she needs help. She needs help with personal care, sitting up, laying down, turning, reaching and lifting things – basically, anything and everything.
They have a hospital bed for Amna at home and a hoist, which helps the family to get her in and out of bed and into her wheel chair.
It has been a long time since they visited their family friends or relatives as it is very hard to take Amna’s wheelchair in every house. They do go for shopping or to watch a movie at the cinemas. Amna loves watching movies. Her favourite movie is ‘The Great Showman.’
Amna loves arts and crafts activities, especially painting – something with which she expresses herself.
“There was a time when Amna broke both her arms within days of each other. That time was hard for her because she wasn’t able to do anything and she became very frustrated and low.”
Amna is her mother’s main priority. Her entire time is devoted to her.
“It’s very hard and very demanding and does take its toll on me and my relationship with everyone,” shares Amna’s mother.
“My lifestyle has completely changed. It’s not about me anymore; it’s about getting Amna through one day at a time, and Adam. I suffer from a heart condition so some days are harder than others. It can all be very challenging and stressful, but every day is a blessing and I wouldn’t change anything.”
Amna receives a treatment every three months for three days. This treatment is called Pamidronate. It’s not a cure but it helps to keep her a little stronger. Photo: Lubna Hammad
But there were days that challenged her, seeing her daughter suffer just because she sneezed and broke a rib.
“My weakest was when a couple of years ago she went through a really bad streak. She had really bad fractures one after the other and they weren’t healing properly because there were no casts or supports.”
“She was in so much pain. She became depressed and traumatised and relived the breaks and pain over and over. Seeing her that way and doctors not being able to help her broke me.”
Amna receives a treatment every three months for three days. This treatment is called Pamidronate. It’s not a cure but it helps to keep her a little stronger.
She is also a member of the Brittle Bone Society in London. The members of this society help Amna to stay strong. As member of this society, Amna works voluntarily to raise awareness about her disease. Every year, the Wishbone Day is celebrated internationally on May 6 to raise awareness for Osteogenesis Imperfecta.
Amna looks forward to this day, when with her drawings and videos she sheds some light on the life of people suffering from this rare bone disease.
