“When I gave birth to him, his right arm was bruised and he was bleeding from his mouth. Two days later, there were blisters all over his body and they began to burst. Since then, that has been his life.” Said Jackline.
Marcus is four years old. He is a boy with a beautiful smile and his innocence and pure heart could melt the cold ice in the North Pole. Marcus is suffering from a genetic autoimmune condition called epidermolysis bullosa dystrophica also known as the butterfly effect.
Jackline Wanjiku is Marcus’ mother. She was told that her son was born with that condition and it is irreversible. She decided to transfer Marcus from his birth hospital located in the Kenyan coast to Nairobi because she found the doctors’ words to be bombastic and she didn’t understand their diagnosis. The disease presents itself as blisters on the body and with time they burst leaving an open wound.
“I can tell he is in a lot of pain because when I wash him, I can’t lift him up because his skin is delicate. When he was a newborn baby, breastfeeding was hard because Marcus would develop blisters on his lips and also holding him was a challenge. Trying to dress him was hard too.” Said Jackline.
In order to provide comfort, Marcus used to sleep in a metal frame with carefully spread bedding with a plastic sheet on top because he could not wear clothes at all. His skin is so delicate. Dr. Hannah Wanyika has been attending to Marcus and she said it is difficult to treat the disease.
Dr. Hannah said, “His skin is fragile to minor trauma, he was born that way. A child has blisters at birth.” Marcus was also not able to go to school because of his condition. He cannot go outdoors or under the sun. “I would love to hold my son and carry him around. That would give me so much pleasure. When I was told his condition is genetic, I became confused and wondered how my son will live without clothes. I am yet to come to terms with this.” Said Jackline.
“He should be out in the sun. The sun is important for healthy skin but if he is to go out, Marcus should wear protective gear. The condition is not life-threatening until someone develops severe anaemia, kidney failure, or an overwhelming infection.” Said Dr. Hannah.
Jackline is currently unemployed because she has dedicated her life to take care of her son Marcus round the clock. Her ex-husband abandoned her and Marcus because he feared the hospital bills would be too much. “I live with my parents. If it were not for their support, I do not know how life would be. I left my matrimonial home because my ex-husband’s family told him Marcus would reduce him to poverty.” Said Jackline.
Palliative care nurses at the Kenyatta National Hospital (KNH) have been of huge support to Jackline and Marcus by offering psychological support, especially to Jackline so she would not despair. The disease is not curable and Marcus is not on active treatment. KNH offered him medication to manage the pain and irritation. Marcus is at the risk of becoming anaemic because of the constant loss of blood.
Hope is not lost. There is a silver lining to Marcus’ story. Kenya Hospices and Palliative Care Association (KEHPCA), worked together with Nimrod Taabu a journalist from Royal Media Services (RMS) to highlight Marcus’ story together with other patients from a sample of four counties in a documentary called ‘The Last Hospital.’ Since the documentary aired a few months ago, Marcus was fortunate to have a well-wisher support him in receiving the much-needed palliative care at Kimbilio Hospice in Uasin Gishu County.
KEHPCA visited Kimbilio Hospice and we were delighted to meet Marcus. Marcus is a beneficiary of the dedicated and passion-driven team at Kimbilio Hospice who have managed the condition to the best of their God-given ability. Marcus can now stand and he is also able to manage short walks. With the help of a volunteer teacher at the hospice, Marcus has also started school and he is learning fast.
“I have seen some improvement in Marcus since we came to Kimbilio Hospice. He is getting some school lessons here and he can move a bit. With the help of special bandages wrapped around his upper body, he is now able to put on a few clothes. The bandages have also helped in reducing the itching irritation Marcus had which leaves him with cuts and bruises.” Said Jackline.
Jackline adds. “I am grateful for the help and encouraging words I have received so far but there is still more that needs to be done. I would like to get a job so I can stand on my feet and stop depending on people for support. This will help me to support my son and give him everything he needs to live in comfort.”
KEHPCAs’ journey to advocate for persons living with palliative care needs continues. Many milestones have been achieved with support from partners and dedicated staff at the national association. Please click on the following link to learn more about KEHPCA and to access resources on palliative care: https://kehpca.org/
To watch The Last Hospital documentary please follow this link: https://www.youtube.com/watch?v=R48lJQu2-ZQ
To read more articles on pediatric palliative care in Kenya please follow this link: https://ehospice.com/inter_childrens_posts/compassion-and-care-for-young-allan/