Introduction
In this blog post, I’ll be sharing our heartwarming journey with our adopted son, Enoch, who has Treacher Collins Syndrome. We navigated through numerous medical tests, speech evaluations, and the overwhelming financial challenge of getting a much-needed hearing aid. But, with the support of a caring community, we witnessed a miracle unfold.
Enoch’s Diagnosis and Tests
Our son Enoch was diagnosed with Treacher-Collins Syndrome, a genetic disorder that affects the development of bones and other tissues in the face. His CT Brain scan showed a number of birth-related abnormalities, including underdeveloped ears and missing outer ear canals. These conditions made it difficult for him to hear and caused delayed speech milestones.
Seeking Help from ENT Specialists
We took Enoch to an ENT specialist who advised us to get a Bone Conduction BERA test done. The tests at Manasa Cochlear Clinic and Dr. Chandrasekhar Institute of Speech and Hearing showed that his middle and inner ear were functioning normally. However, Enoch needed a Bone Assisted Hearing Aid to hear properly. We were delighted when he responded well to the hearing aid during the trial.
The Financial Hurdle
Initially, I assumed from my online research that the hearing aid would cost between 25,000 to 60,000 INR. However, we were shocked when the doctors informed us that the actual cost would be 2.6 lakhs INR. This enormous amount took us aback. Determined to verify the cost, I reached out to other hospitals and found that the prices were consistent. I discovered that there are three companies that manufacture these types of hearing aids: Cochlear BAHA, which costs around 5 lakhs INR; Oticon Ponto, which isn’t distributed in India; and Medel Adhear, which was unanimously recommended by doctors for Enoch.
The Power of Prayer and Community Support
We prayed and sought guidance from God, trusting that He would provide for Enoch. We started a fundraiser on Milaap and shared our story. To our amazement, contributions poured in, with many anonymous donors and people we didn’t know personally. It was a testament to the goodness and kindness in the world.
A Helping Hand from Dr. Nitin’s Trust
Dr. Nitin, from Dr. Chandrasekhar Institute of Speech and Hearing, also lent his support through his trust, RUDH Hearing and Speech Clinic. His trust donated a generous 43,000 INR, and many of his contacts contributed through Milaap as well.
Reaching the Finish Line
With our contribution of only 18,360 INR, we finally had enough to purchase the hearing aid for Enoch. We were overjoyed to see him respond to sounds and begin to speak more. We are hopeful that he will catch up on his delayed milestones soon.
A Sincere Expression of Gratitude
We would like to extend our heartfelt appreciation to each and everyone who supported us. Among the contributors, there were 23 Anonymous donors.
Alona Dsouza, Aiswarya Anand K, Akshay, Ashwin, Chandrashekhar Pantina, Chai & Sindhu, Chiranjeev, Dhanashri Manjrekar, Dinesh & Swetha, Dona & Printo, Harshini, Jerin Jose S O Anie, K S Raja Sekhar & Swecha, Kiran, Lydia & family, Lorraine Aunty, Luke & Rachel, Meet Somani, Melvin & Regina Fernandes, Nandu, Nidhin, Naresh, Neel Talwar, Neetha Kamath, NLF Marathahalli & Sekhar, Palakonda Gowri Sankar, Parth Trivedi, Pd Obed Chiru, Pujan Sathwara, Ramon Varghese, Raviraj Shinde, Sanjay Prajapati, Shamala Kabadi, Sheetal Somani, Shreeram Hari Narayan Thakur, Shrihari, Shimin, Sourabh Singh Yadav, Srikanth Pachala, Srivats, Subhash P, Subramanian P J, Sumit Krishnan, Supriya Barad, Tintius Alois Toppo, Uma Aunty, Wilsani Ashish Moparthi
Your kindness and generosity have made a significant impact on Enoch’s life. We pray that God blesses each one of you abundantly for your compassion and support.
Conclusion
Our journey with Enoch has been challenging yet rewarding, and we couldn’t have come this far without the support of our community. This experience has shown us the power of coming together and the beauty in the world. As we continue to care for Enoch and face the surgeries he will need due to Treacher Collins Syndrome, we are grateful to have such a supportive network of friends, family, and even strangers. Thank you all for being a part of our journey and Enoch’s hearing miracle.