Support MND medical care for my brother Isaac

Hi, my name is Jim Khaemba and am fundraising for my follower brother Captain Isaac Ochieng who has been unwell for over two and a half years now (since Feb 2022) - diagnosed with motor neurone disease (MND). This has meant that Isaac is under home-based ICU support, breathing with the aid of a mechanical ventilator and being taken care of by a team of nurses round the clock.

Isaac is an Embry-Riddle University (USA) trained Aeronautical Scientist and Commercial Airline Captain/Instructor. He is a loving father to two sons aged 12 years and 7 years.

Onset and progress of Isaac’s illness

Isaac was employed by Kenya Airways, the national carrier of Kenya and in good health while he performed his duties uninterrupted for 20 years. However, around November 2021 he noted that his usual agility was slowing down with notable weakness in the hands and legs. These symptoms persisted which made him seek medical help.

Upon a visit to his primary physician, an MRI scan (Craniospinal) showed a spinal cord compression at C5, 6 region which was thought to be the cause of his condition. After evaluation by a neurosurgeon, he had a surgery done - Anterior Cervical Discectomy and Fusion (ACDF) on 18th February 2022. During the surgery, Somatosensory Evoked Potential (SSEP) and the Motor Evoked Potential Monitoring of the CTST tract was done and both were normal. He was discharged after two days, and a six-week post surgery neuro-physiotherapy was initiated. However, he continued to have muscle weakness and needed more supportive help. Also, at this time he started developing breathing difficulties.

Isaac’s condition continued to deteriorate leading to an emergency admission in hospital in respiratory distress on 17th April 2022. On further investigation upon admission, he was diagnosed with a blood clot in his lung and transferred to Critical Care Unit (CCU) for treatment and observation. On the same night, he went into respiratory failure and had to be put on a mechanical ventilator. Subsequent efforts to wean him off the ventilator failed and had to remain in the CCU. Due to prolonged intubation and challenges in weaning off the ventilator, a tracheostomy was done. Upon further investigation and specialist consultations, a diagnosis of Amyotrophic Lateral Sclerosis (ALS) also known as motor neurone disease (MND) was made.

On the advice of the medical team, it was decided that a suitable homecare arrangement would be most appropriate to manage this condition. Consequently, a Critical Care Unit was set up at home comprising of a mechanical ventilator (with spare one), electric 5-function bed, suction machine, nebulizer, patient monitor, oxygen concentrator, oxygen cylinder and an automatic generator for power back-up. Isaac was then transferred to the home CCU on 18th May 2023 under the care of 2 nurses round the clock (one critical care nurse and another general nurse) with regular review by a critical care physician, a neurologist, a nutritionist, a physiotherapist (twice daily) and other specialists.

Home care and life support

Isaac’s condition has progressively deteriorated and is now on total nursing care. He has lost all forms of mobility, speech and ability to swallow. The Home Care includes 9 critical care nurses working in shifts 2x7 (they feed, bathe, groom and clothe Isaac, brush his teeth, turn him in his bed, take him out to the sun, as well as helping him with his bathroom needs). We have had to acquire a Medior Mobilizer (specialized wheelchair) to assist in moving him around and an EyeGaze communication device (to assist with communication).

The home care, medication and other supplies cost about $8 ,000 (Eight thousand US dollars) per month and higher in the event of any special intervention.

Considering that Isaac is no longer in employment and medical insurance providers have declined to cover his condition, he needs financial support for sustained quality critical care that includes:

• 6 critical care nurses round the clock with 3 professional nurse and 2 nurse assistants (1 critical care nurse + 1 professional nurse + 1 nurse assistant per shift, 24x7)

• Medication

• Consumables

• Backup ventilator and oxygen concentrator to aid with his breathing

• Specialized food administered directly to the stomach using a feeding syringe and a peg

• Psychological and medical counselling for the patient and the family

We therefore wish to reach out to friends, well-wishers and any organisations who may be able to assist in any way possible.