The next step will be to set up a Foundation in Lemayian's name to support families in a similar situation, so they can be spared some of the hardship.
Any funds we receive in excess of our needs will be used to help them financially, as sadly insurance companies have a very low cap on the cover they offer children with congenital conditions, such as Down's Syndrome.
The story below was written to raise funds to evacuate him to London for treatment, and gives a bit of background to the last months of Lemayian's life.
Sadly, his condition deteriorated rapidly and he was not stable enough to be evacuated. He has suffered enough.
Lemayian Temesgen is our strong son of 1 yr 11 months. His resilient nature shines through despite having endured grueling occupational therapy sessions since he was 3 months old and up until February this year he was doing well and developing at a good pace and was enjoying crawling all over the place and learning to walk and kick a ball around with his sister and playing on the sand, slides and swings.
However, by late March Lemayian's progress started slowing down. He became withdrawn in March - we put the brakes on therapy and gave him some time to relax. But he kept getting colds, and by end of April found it difficult to keep down his food, and he rapidly lost weight and strength. Multiple doctor visits and tests yielded no diagnosis.
He was hospitalised and ended up spending two months at the Aga Khan hospital in Nairobi. One of the main issues was inability to absorb and retain nourishment from his food. He was in the high dependency unit for a long time and had countless tests aiming to diagnose the problem. They treated him for Sepsis and CMV which he picked up during his stay in the hospital and from a blood transfusion respectively. They have done a biopsy and luckily ruled out lymphoma, leukemia and any malignancy in general. It has become a very complicated problem and appears to be multi-faceted, involving the gastrointestinal system, immune system, skeletal system, nervous system, and his skin. Lemayian has now been diagnosed with Down Syndrome and unconfirmed diagnosis of a rare disease called Linear Nevus.
New medical issues are continually being found and it is a constant challenge firefighting each problem that crops up. He has needed 8 blood transfusions so far on a regular basis as well as platelets transfusions and each unit of platelets costs $400 per dose.
Lemayian is a little superhero and he finally made it back home in early July. After two weeks at home he improved steadily and gained weight, despite ongoing fevers unresponsive to medication. Feeds were by tube but he managed after a couple of days to move from Neocate (basic amino-acid formula milk) to lactose-free milk. He could sit again and things were looking good.
However after a checkup it was found that he required another transfusion and was taken to Gertrudes Children's Hospital. After that his fevers became more intense so he was kept in hospital with antibiotics to treat a urinary tract infection. He was in generally good health but within a week he had painful stomach cramps and difficulty with bowel movements. An ultrasound showed bowel blockages. Diarrohea followed and he lost a kilo within 36 hours. He was taken off all nutrients and was on a drip, very thirsty and hungry but unable to retain any food or liquids without consequences.
Then late yesterday evening (Monday 7th August) we noticed that he had become very cold, and he seemed in distress. We asked a nurse to check his vitals and when she did, she immediately called the crash team and he was immediately being resuscitated.
Lemayian is now in intensive care with a breathing tube, and on a cardiac machine. He has sepsis, likely from a wound on his foot caused by a previous attempt at taking blood for tests.
Lemayian has been under the care of highly respected doctors in Kenya. But he clearly needs more than this because the underlying problem has not been diagnosed and the consequences of firefighting the recurring symptoms are affecting his quality of life.
We would like to take Lemayian to the UK for care. He is a British citizen and the best solution for him right now is care from specialists in the NHS.
He is clearly not in a position to travel on a commercial flight. We have been quoted $70,000 by AMREF for medical evacuation. We are looking for cheaper options. Our plan is to get him to London, St. Thomas' hospital, at the Evalina children's hospital.
We are unable to raise the funds for medical evacuation and are now worried about the cost of the hospital bill. Our insurance company have only agreed to pay a maximum of $2,50O under the pre-existing condition cap. This means there is no way of covering our current hospital bills let alone medical evaulation. We have appealled to them and this has been rejected.
We really need to get Lemayian to the UK so he can finally get treated for the root cause and back home with his family. We don't know how long it will take to get a grasp of the full medical situation and therefore our fundraising goal is an estimate right now. We are moving mountains and we need help .
We are deeply humbled and grateful for any help to get Lemayian through this. Keep it up Lemayian the Lion!
Parselelo, Hana, Santayian and Sesenet, rest of his loving caring family and fan club.
- Navid Chowdhury
- Shima Mahdavi
Organizer and beneficiary
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