Viyan’s Family
Life is ever so unexpected. We never know what kind of <unexpected or some other word here> it will bring us. This is exactly what happened to us during the fall of 2015. Viyan was born on September 15, 2022, as a healthy baby. Our entire family was very excited about his arrival. Little did we know that life was about to throw our lives into world-wind as we received an unexpected news that very afternoon day. He was not only born with bilateral hearing loss, but he also had trisomy 21 down syndrome which both of them together limits his ability to learn, grow, and what he can do with physical limitations. It was very difficult for us to accept this dreadful news. However, we were ready to tackle this phase of our lives and make better of the situation at hand. We immediately started looking into various intervention and support systems from non-profit organizations such as Baby’s Can’t Wait and Georgia Pine to learn, strategize and plan for his future. We then consulted with various doctors at Children’s Hospital of Atlanta (CHOA) via referral from Viyan’s pediatrician. It was a blessing when we heard that Viyan can be implemented with a bilateral cochlear implant system which allows him to hear again. He was implanted with the system during the fall and winter of 2016. We literally cried during his first booth test when he responded to the sound for the very first time. However, our struggle was not over. The implanting of the system was only 50% of the solution. The other 50% would come from various therapies which he would require in order for him to be successful. As a parent, we were offering a maximum number of therapies to help him cope. He was enrolled in specialized speech therapy along with Physical and Occupational Therapies (PT and OT) throughout his Pre-K education as well as receiving these interventions from outside sources via private therapies. As we convey this story, he just turned 6 years old. We have seen drastic improvements not only from his communications standpoint but also seen his physical abilities getting stronger. In all of these things as it was happening, we had also struggled with financial obligations as these interventions which he dearly needs are not feasible from the money standpoint. However, we have been blessed to apply and been offered a state funded “Right from the Start Katie Beckett” program, which is helping reduce some of the financial burden due to his therapies, but not all of them. Together, we have only one earning member in the house as the other person is fully occupied with house and therapy duties. We still face financial struggles as we not only continue to offer best interventions and therapies out there for Viyan, but also continue to manage and pay for household chores such as paying for rent, utilities and other things that are needed.
The physical bilateral cochlear implant system along with his various speech, PT and OT was only meeting 75% of the goal for him to be successful. Although he could hear the sound and was receiving speech therapy, he was still struggling distinguishing various sounds and beats, but all that changed in the fall of 2021 when we enrolled him in the skilled Music therapy from Therabeats Inc. We had again consulted the deficiency in distinguishing sounds and beats with both his pediatrician and his Speech Therapist prior to enrolling Viyan in Therabeats Inc. It was again a blessing from the sky. Viyan is now able to distinguish sound from different musical elements and also follows the rhythm. As a result, he has increased his verbal output as well as his receptive output. He loves listening to music. The current statistics and progress for Viyan shows that he has trended or improved in following areas: Sensory 91%, Social 80%, Gross Motor 75%, Oral Motor 70% and Musicality 80%. The future progress shows trends upward as he continues to attend and gain skilled Music Therapy interventions. As per recommendation by the expert, Viyan should attend skilled Musical Therapy at least 1-2 time(s) a week, 60 minutes Music Therapy intervention session(s). The cost for each session is totaling $90 for 1 session a week. This is totaling to about $360/mo and about $4,320/year. We are indeed in need of financial assistance as we are currently running over the household planned budget for the year. We have cut and exhausted our monthly and yearly cost in many different areas to meet the tuition fees for the skilled Musical Therapy, but we continue to struggle financially and require assistance.
We are really looking forward to receiving scholarship/ Financial assistance from your organization which will help us in continuing his Music therapy with Thearbeat and thus help with his overall communication Skills.
Gift: Musical Therapy sessions
Location: Cobb County
Given: November 2022