#1 (12 Feb, 2021)
Here is how Day 181 has turned out to be!
The events of the last few days have strengthened our faith in our government & humanity. We are proud citizens of India, and this is why.
Day before yesterday, the Min. of Finance, Dept. of Revenue issued an ad-hoc exemption order on behalf of Teera to direct the department of customs to grant a customs duty & GST waiver on the import of Zolgensma. Concurrently, the Health Commissionerate of the state of Maharashtra issued certificates for custom duty & GST waiver.
On the other hand, Teera is still the same as last time. It has been close to 2 weeks since she was discharged and she is stable on a ventilator. While awaiting her medicine, we are managing her condition at home.
Thanks, 1L+ donors who made this possible. Your love for Teera is why we wake up every day to fight. Thank you! #2 (29 Jan, 2021)
Day 168. Today is the day we feel utmost grateful.
Finally, after many days, a proper smile on our little angel's face. We will get to go home tomorrow, albeit with a bunch of training and warnings. Teera will need special care at home until her surgical wounds heal.
Also, we got a breakthrough on the customs duty and taxes front. Yesterday’s news coverage brought a lot of help in our direction, including officials from the government and well-wishers, knowledgeable of the customs process. They provided us with a step-by-step insight into it. We are now working through it. The good news is, we won’t have to continue fundraising. To that effect, we have stopped the ImpactGuru fundraiser.
Our next challenge is working with our doctors and the pharma company to procure and ship the medicine here and then administer it to our doll, under their expert care. It is a time-consuming process, so, we will post regular updates.
Other SMA children are starting off, where we did in October of last year. In the next week, we plan to feature some stories and offer any help we physically can.
Thank you, everyone, for opening your hearts for our little Teera. Please continue praying for us, that she heals well and is in good condition to receive her gene therapy soon. #3 (27 Jan, 2021)
Thank you for being our and Teera's support system.
Teera is off the big hospital ventilator and has been moved over to the portable home ventilator, however, she is still in the hospital. Her body still hurts from all the surgeries, and she’s finding some comfort sucking on her pacifier. External feeds are on, and we expect her to gain weight in the coming few days.
We have met with, personally or have reached out to key contacts in the central and state government for tax waivers but talks seem to be going around in circles. The main argument is, "If taxes are waived off for one, it will need to be waived off for everyone, and that will need a policy change." We’re still trying hard, but Teera doesn’t have that kind of time.
In a separate discussion, we were also told that since Teera’s is a pre-existing genetic condition, her insurance claims will be denied. With that, we are no longer waiting for that as an option. Teera's hospitalization expenses are also coming out of our pockets. Therefore, we have decided going back to full time fundraising. Our entire journey will go down the drain if the medicine arrives and gets stuck at the Customs.
As promised, if we receive help from the government at any time and the raised money is left over, we will donate it to another SMA cause.
Only 19 days are left for her golden window to end. Taxes and duties will come to the tune of 5.6 crores, if not waived. Teera needs your urgent help.
Please donate. Share. Support. #4 (22 Jan, 2021)
Our little girl continues to be an inspiration to us grown-ups. How she continues to smile amongst such pain and discomfort is still a mystery. We are beyond proud of her, we don’t know what good we did in our past to deserve such a beautiful soul in our family.
Teera’s weakening chest muscle is worse than we originally thought. The chances that she will aspirate on her own saliva increase ten-fold when there is a machine pushing air through her nose. Which is why the home ventilator with an external mask is not an option anymore.
Doctors have advised us to get her 3 surgeries - all 3 will be done together so she doesn’t have to be put under anaesthesia again and again. The tracheostomy will ensure the home ventilator will push air through her throat instead of her nose. The fundoplication will take care of her reflux issues. The gastro tube will help feed her through her stomach, thus bypassing her swallowing troubles. We can then manage her condition safely once all surgeries are completed successfully.
We spoke to multiple doctors, including the hospital’s senior-most director and have been assured that kids who improve once they get treatment have a very good chance of not using the trachea and the g-tube and that both can be removed later. Only that it will leave behind a tiny scar.
With any surgery, there will be risks associated. This is her best chance to solve her life-threatening issues. We have to give her this fighting chance after coming so far in our journey.
Please, please pray for Teera that she recovers quickly and thrives after the surgeries. She is a great candidate to recover fully once she gets Zolgensma. Please continue to share her story on all social media platforms and get her the life-saving yet the world's most expensive drug. Support our little girl fight with SMA. #5 (15 Jan, 2021)
Last night has been one of the longest nights of our lives.
In the past week, Teera had constant food reflux and required anti-reflux medicines. Yesterday, we heard her making a throaty, gargling sound. Within seconds, her lips turned blue, and then slowly, her face.
No breath sounds, no abdomen movement.
After a desperate round of back-patting, chest massage and throat suctioning, we cleared her airway and restored her colour back to a pale white.
She looked ghastly, eyes closing, ready to fall asleep. We grabbed her limp, barely breathing body and rushed her to the nearby ER. Due to the episode, her oxygen saturation had dropped and she was given external oxygen. More X-rays, more blood reports, more doctors and PICU care.
She is still in the PICU, albeit transferred to a critical care children's (SRCC hospital) where she is getting round the clock intensive care.
Our little doll Teera turned 5 months old today. Every month, since October, she was rushed to the emergency room on her monthly birthday. This time was no different, but what is also not different is her fighting spirit. She is connected to tubes in both hands, a feeding tube in her nose, and oxygen tubes to help her breathe. But her smile has not disappeared, it is stronger than ever.
And it is her smile that gives us the courage to stay positive in the wake of this storm. Thank you for holding on to Teera's hands through her troubles. She is inching closer to receive Zolgensma because you are donating and sharing her story. Please continue to do so. Help our doll celebrate the milestone of turning 6 months old, not in the hospital, but at home, shining with good health.
#6 (05 Jan, 2021)
Your overwhelming support and love for the little one have given the child and her parents all the positive reinforcement they needed at this time. Teera is showing an extraordinary resolve to fight SMA. Though her grip is loose, she attempts to hold her toy. Very soon, with the (world's most expensive) medicine, she will learn to pick up her toy as well. As parents, we couldn’t be prouder of our darling daughter. Yet, the fear of what SMA is doing to our baby looms over us.
Teera had a fever on January 3, 2021, that she recovered from, but is now dealing with an upset stomach. We have changed her formula so that she continues to get the nutrition she needs but doesn't end up with an upset tummy.
Teera will visit the doctors for her weekly pulmonary and gastro evaluation. Our sweet one is being monitored by the doctors so that they can introduce her to enteral nutrition through PEG tube (a tube attached to the stomach for liquid food and medicines). As Teera is getting weaker by the day without the required medicine, the doctors will check if she needs to be put on a BiPAP machine that will help her with her breathing.
We can see how courageously Teera handles all her health issues, at such a tiny age. It gives us the faith to remain positive even when we know, Teera's lungs are most affected by SMA. Also, when we heard about the tragic passing of two children who were not even 2 to SMA, we knew it was time we request you again to share our Teera's story with every one of your friends and family. Please continue showering our girl with your kindness.