Introduction
Adopting a child is a beautiful thing. It is the beginning of a new chapter in life that brings joy and new experiences. It is a journey of emotions, love, care, and responsibilities that change life for the better. However, it is not always easy, especially when the child has unique needs that require extra care and attention. This is the story of our adopted son Enoch, who has Treacher Collins Syndrome, a rare genetic disorder that affects the development of bones and other tissues in the face.
Enoch is a happy child, full of life and energy. He is always up for a good laugh, and his smile is infectious. However, his condition makes him vulnerable to breathing difficulties, especially at night and because of this cleft palate. This was a cause for concern as it affects his sleep quality, and if left unaddressed, it could impact his health and well-being in the long run.
Enoch’s Diagnosis of Sleep Apnea
We took Enoch to a sleep study, which revealed that he needed to be initiated on a CPAP machine for about six weeks before his cleft palate surgery. However, the cost of the machine (50K to 1L), the mask (5K to 10K), and the initiation (10K – 15K) and follow-up routines were staggering, and we were not sure how we would manage financially. This is why we reached out to the Organization for Rare Diseases India (ORDI), a non-profit organization that provides support to families with rare diseases.
ORDI’s Assistance with the CPAP Machine
Prasanna Sir from ORDI presented a seminar at Airbus India where I worked. I was able to contact him and tell our story, and to our relief, he quickly arranged to get us the CPAP machine free of cost from his donors. We were greatly blessed even much more than we could imagine at this turn of events. Madhan Gopal Sir from his team delivered the machine to us and encouraged us further with his experience.
CPAP Initiation and Hospital Stay
We contacted Shishuka Hospital for the CPAP initiation, where Enoch was required to spend two nights at the hospital to get started using the CPAP machine. Initially, Enoch was uncomfortable with the mask, but soon he adapted to it. The first night, the CPAP machine was set to 4cm H2O, and he still had some breathing noise. But on the second day, the pressure was further adjusted to 6cm H2O, and he slept comfortably.
Interestingly, at about 2:50 am, Enoch awoke from his sleep very fresh. And for about 45mins continued playing with me, smiling, kissing, and hugging. It was amazing. Finally, he succumbed back to sleep. This was a sign of hope that the CPAP machine was going to be beneficial for him in the long run.
Enoch’s Journey with CPAP
Post-discharge, we are to now continue using the CPAP machine whenever he sleeps (afternoon or night) so that his air pathways get stronger to sustain even after the cleft palate surgery. We were grateful for the support we received from ORDI and Shishuka Hospital, which made the process much more comfortable and manageable for us.
Conclusion
Adopting a child with unique needs requires extra care, attention, and support. It is a journey that can be overwhelming, but with the right support system, it becomes more manageable. ORDI’s support was invaluable in our journey with Enoch. Their generosity, kindness, and empathy toward families with rare diseases are admirable and inspiring.
We were blessed to have such kind and compassionate people help us during this difficult time. It reminded us that we are not alone, and there are people who genuinely care about others’ well-being. God continues to show us his presence by continuously uplifting us through different means.
Thank you for taking the time to read our story. We hope that it has inspired you and given you hope that there are people out there who care. Remember, you are not alone, and together, we can make a difference.