Help a Girl with Rare Epilepsy Get a New Bed!

Sasha Kogan is an incredibly spunky 17-year-old girl with Lennox-Gastaut Syndrome, or LGS. LGS is a rare type of epilepsy that involves several types of seizures and leads to brain damage and degeneration over time. At the age of 5, LGS stole Sasha’s ability to walk, talk, and play. Unfortunately there is no cure for LGS. Sasha is terminally ill and will continue to decline in the coming years of her life. Despite this, she has never given up. She constantly fights to retain basic skills like swallowing and coughing. Sasha is a scorpio and maintains her mighty attitude any way she can, and her determination and strength is an inspiration to us all.

As Sasha’s life progresses, her family of caregivers is faced with new challenges. Sasha is about 58 inches tall and 140 pounds now at 17 years old. Because of the progressive nature of LGS, she can no longer shift herself in bed or perform self-directing movements, meaning all adjustments and movements must be carried out by her caregivers. We currently do not own an adjustable bed for Sasha, and are currently carrying her between a normal bed and an armchair. Due to her growing size, I (her mother Freda Kogan) have sustained a stress fracture and a rotator cuff injury throughout the years. It is no longer sustainable to keep her healthy without proper medical equipment.

The more Sasha remains stationary for long periods of time, the harder it is to clear her lungs of fluid and prevent infection. Because of this, Sasha has been in the Pediatric Intensive Care Unit more than 5 times in the past 24 months for pulmonary issues. Sasha is extremely immunocompromised and every time she is hospitalized, it is as much a risk to her health as it is a necessity. In fact, she is currently hospitalized (as of 05/01/23) because of continuing pulmonary issues, and in the hospital she sustained a collapsed lung. As is the nature of LGS, Sasha will continue to decline over the coming years, but we are not prepared for her emerging, more complex medical needs with the equipment we currently have. We are asking for help in securing Sasha a speciality pulmonary bed for use at home.

This specialty pulmonary bed would allow us (her family of caregivers) to adjust her posture, adjust the side of her body she is laying on to prevent bed-sores, provide percussion chest therapy, and allow her to sit up, without risk of caregiver injury. In addition, the pulmonary bed provides a wider range of comfortable positions to Sasha than we have right now, which will prevent hospital admissions in the future due to pulmonary issues. This bed also has therapies that we currently do not have access to at home, like vibration and percussion therapy, turn assist, bed sore prevention, and more. With the help of this pulmonary bed, there are more interventions that we can perform at home with Sasha before we have to resort to going to the hospital. Again, hospital-acquired infections are a huge issue with Sasha that is critical to avoid as she continues to decline.

Our goal with this pulmonary bed is to not only make Sasha much more comfortable, with access to a wide range of comfortable resting positions, but more so lower the number of bedsores she sustains, lower the number of lung infections she sustains, and lower her number of admissions to the hospital. This pulmonary bed would be an absolute game changer to her health and her quality of life.

We are asking for $8000 towards the pulmonary bed: $6000 will be delegated towards the bed itself, which ranges from $4500-6000 refurbished online from a medical supplier. The other $2000 will be delegated to medical accessories for the bed, which are essential to the functioning of the bed and can be quite expensive.

Would you be willing to donate $20, the price of one take-out lunch, towards helping a child with rare epilepsy get a new bed? It would mean the world to her. Thank you very much for reading, please share and spread the word!