Story 4 – KeKe
‘I was crying after the surgery, but I was overjoyed as my leg would heal soon.’ – Li Keke
Keke was a lovely girl from Anyang, Henan Province. She was born with a rare disease called tibial pseudarthrosis, causing her lower left leg atrophic and to bow severely at 100° when viewed from the front. Her false joint deteriorated every year and her family had taken her to numerous medical visits, even to Beijing for some years.
Her mum Mrs. Li recalled, ‘Keke could not walk to school properly like others. Thus her grandpa has to take her to school by bike everyday. Sometimes she fell on the ground with her knee bleeding. My tears fell every time and I was so desperate to have her to lead a normal life like other children, walking and playing freely. I just wanted to give my own leg to her.’
The family spent a fortune for Keke to keep trying different treatments yet the result was not satisfactory. The doctors in China at last suggested leg amputation as one option. ‘I could not believe this was it and my heart was broken. If she would have her leg removed, she would walk with difficulty for her entire life. She would have been watching other kids at her age to run. I could not accept that.’ Though Mrs. Li received the same medical advice repeatedly, they refused to operate and continue to seek other options to avoid the little girl being labelled as physically disabled forever. It is a sad truth that people with disabilities in mainland China is a vulnerable group and many still experience implicit barriers in society.
Keke had a tough childhood because of her severely deformed leg
In 2010, Mrs. Li received news that a doctor from Hong Kong offered free consultation at a hospital in her province. Feeling doubtful and worried, she took Keke to take another try. ‘I was really thrilled to hear from the doctor that Keke is possible to be cured. We were so eager and waited and waited until the day to go to Hong Kong for treatment.’
With the sponsorship of SRDC, Keke and her mum was arranged to visit DKCH in August 2010. Her first surgery took place on 12 August 2010 to have the 10cm of pathological segment removed. With bone transport, Ilizarov fixator is applied to the leg. The bone is surgically cut and the ring equipment is attached. As Keke recovered, the fractured bone began to grow together.
The recovery was long as the bone was growing, the fixator was also adjusted to increase the space between the two rings. The little girl received pin tract care in the clinic to avoid infections as well. She was also sent to the rehabilitation center for adding accessories to facilitate walking in the Orthotic Department after the surgery.
Mrs. Li and her girl stayed for Christmas with a lot of blessings and gifts. Three months later, Keke’s condition was progressively improved and the second surgery was successfully done in January 2011. A 10cm bone transport replaces the resected area. During the lengthening phase, the fixator stayed on the leg for consolidation.
Keke was discharged on 19 January 2011 and returned home. She came Hong Kong nine months later for removing the fixator and measuring the leg braces. This time plaster cast was reapplied for continuous protection until the bone consolidation was completed.
Mrs. Li wrote, ‘I was very happy when I saw her leg recovering day after day. I didn’t have to carry her on my back and worry about her schooling any more. We were leaving Hong Kong. Though we did not have relatives here, you (staff of DKCH) were just like our family and showed care and love to us. I thank whole-heartedly to Dr Chow and the nurses’ care and also the help from the Society for the Relief of Disabled Children.’
Her doctor visited Keke in April 2012 and the girl could walk well in brace with crutches. We were so glad to know that her new bone was regenerated successfully. She started to walk independently two years later.
Keke’s thank you note
I was very nervous yet happy when I first arrived at the hospital. Because I was fortunate to come and I thought my leg would be saved… I was happy to hear what the doctor said before the surgery, ‘Cut the bad bone and stretch it until it’s at the same length as the right leg. You can return home and the success rate is high.’ However I was very scared of the pain during my treatment. I was crying after the surgery, but I was overjoyed as my leg would heal soon. After one month, another bone was transplanted to my leg. We were all very happy because the surgery was a success.
I am leaving now after staying here four months. I would like to thank my doctor for treating me, SRDC’s help or else we could not afford the medical expenses and also the nurses who took great care of me so that I can finally recover.
Wish all children in the ward to get well soon!
18 January 2011
Medical follow up in Anyang of Henan Province, April 2012
Last update in June 2014