1040 grams, she weighed on 31st May 2019, when she hurried into this world 12 weeks ahead.
Sonali, we named her, wishing her to shine bright. Lest we knew, she would take unimaginable levels of stress (pre-eclampsia; high blood pressure) inside my womb to become the golden girl she is.
I am Sowmya, mother of Sonali, our 28-week preterm baby born with Antenatal Grade 4 (severe) brain bleed and acquired post haemorrhage hydrocephalus due to the bleed. This means she has clots in the ventricles of her brain which obstruct the cerebral spinal fluid flow and thereby putting pressure on her brain and causing global brain damage. As a result of this, Sonali cannot move her left arm and both the legs effectively and making her visually impaired to an extent. In medical terminology, Sonali is diagnosed with Cortical visual impairment and Cerebral palsy which is causing spasticity[tightness] in her left arm, and both the legs
Sonali, now 13 months old[corrected age], doesn't yet know that she is unable to perform these normal functions[crawling/standing/walking], she thinks she can, and is trying hard to discover her capabilities, failing many times but showing true grit in her therapies, amazing the doctors with her determination to move.
NICU Journey and the Life after NICU Graduation
Sonali knows she is a tough girl right from her NICU days, when she braved two brain surgeries to intervene with the hydrocephalus on day 7 and day 50 after birth, when she ideally should still be floating in the warmth of my womb. Thanks to the exceptionally skilled doctors at McMaster Children’s Hospital, she came home last year on Sep 24th after 117 days in the NICU.
She has been involved in various therapies [Physical and Occupational Therapies] to gain her movements, documented in the attached video file. Again, thanks to cord blood donors, and the latest stem cell treatment, a recent stem cell infusion of donated cord blood cells, made her gain trunk control and she started little balanced sitting, improved her vision slightly, and reduced the spasticity in left arm, and also removed the severe reflux, which caused life-threatening choking almost every day.
We are trying hard with all our might to give Sonali what she needs, which is timely early medical intervention. With a timely surgery (SPML), we can release her spastic muscles, and give her the strength to bear weight on her feet. With timely therapies, we can possibly see her walk and improve her vision. With timely interventions we can make Sonali's belief, that she can do it, come true.
It is of the utmost importance that these interventions are given to her at the right time, to enable her to grow into these capabilities naturally. For over a year now, we have been pooling all our strength and financing these therapies. We are a young couple yet to make our own life and family, looking for help in trying to give the only possible treatment [SPML Surgery], which is available in the US, cannot be covered under the Private insurance or Ontario Public Health insurance [OHIP]
How the funds will be used
While SPML surgery is a kick start to get her spasticity removed to a great extent and costing around USD 80,000[CAD 110K] due to her complexity and the follow up therapies like NDT physiotherapy ,CME therapy and HBOT sessions and multiple stem cell infusions which are needed to help maintain the stability and achieve her milestones.
These therapy sessions help in rewiring her brain and make her learn the movements. Sonali needs these therapies frequently after the surgery for the next 3 years as part of Early intervention.
The community therapy programs are not sufficient enough and we have to take Sonali to private intensive therapies who are specialized in pediatric neuro developmental training to see better results and faster recovery.
Detailed Explanation of the Funds required:
CAD 110-115k for the Surgical procedure.
CAD 40,000 for Trexo Robotic Walker
CAD 25,000 for HBOT treatments
CAD 6000 for Beamer Mat to help with Sonali's Pain due to spasticity
Cost of Intensive Therapies for upcoming 1-2 years:
Spiral Movement Center : CAD:1000/4 days ,She needs more of them in the coming years until she achieves her milestones which costs upto CAD 40,000 for next 2 Yrs
NAPA Intensive sessions CAD : 25K
CME Intesive sessions CAD: 28K
Vision Therapy and Movement lessons : CAD 30K
Donated cord blood Stem Cell Infusions:
CAD 25,000 - this is needed 4-5 times in the next 2 and half years for Sonali to possibly get her cortical white matter thickness improved to eventually gain her vision back, which totals to CAD 125K.
This does not include any of the incidental costs of travel, loss of pay, and any contingencies after surgery. Yet we are determined, as much Sonali is.
Sonali knows she can move the limbs, and we request your generous kind hearts to help her move them and help her get all that medical intervention she needs in the crucial 12 months ahead.
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