- M
Hello, do you know our daughter Sia?
She's the one who’s always smiling, our sunshine, our little fighter.
She was born in March 2021, weighing 915 grams or 2 lbs, at just 25 weeks of pregnancy. That’s 15 weeks or 3 and a half months prematurely, so she *had* to be a fighter. She needed to be resuscitated at birth and then spent 133 days or 4.5 months at the NICU (Neonatal Intensive Care Unit) at the Montreal Children’s Hospital. She was intubated for the first 10 weeks of life, with a total of 6 failed extubations and reintubations. She received all kinds of medications while there: from steroids to narcotics such as morphine and fentanyl, to caffeine, etc.
We will spare you with the various complications we faced during those endless months but will say that thanks to an innovative breathing support approach that two doctors believed (read more here: https://globalnews.ca/news/8755707/one-year-old-born-premature-muhc-specialists and https://issuu.com/cheznous2020/docs/cheznous_winter2022_en4/s/14925785), she ended up avoiding an open-heart surgery. Once she was discharged, she was still on home oxygen - which was supposed to last for at least 6-8 months. But thanks to her strong will (and a little bit of our positive energy), her lungs matured fast and Sia was able to breathe on her own by the end of October 2021.
For us, she has always been a perfect little girl. However, the professionals saw her delays, even though it was too early to clearly diagnose her at that time yet. Soon afterward, we got the dreaded two words: cerebral palsy. And then about a year later another one: global developmental delay.
To give you an idea: Sia cannot walk, stand, or sit on her own, she isn’t able to call us “mama” and “papa”, and she neither feeds nor dresses herself. Which means that she needs 24/7 care. We are glad to be here for her, absolutely, and we won’t hide that some days are harder than others – or full of obligations, appointments, or scary surprises.
Here is a list of activities and equipment she regularly does and uses – or did in the past:
• Standing board daily for her posture, bone mass, and digestion.
• Walking with a walker – we mostly go to a shopping center since it’s easier for her.
• Adapted tricycle riding which she simply loves!
• Weekly physiotherapy, including many privately trying out different approaches.
• Occupational therapy for her fine motricity (eating, for example).
• Speech therapy.
• Special education therapy.
• Horseback riding as a form of adapted physiotherapy.
• Swimming lessons to help her remove the hypotension in her limbs.
• Hyperbaric oxygen chamber in an attempt to (re-)activate her brain cells.
• Tibial orthotics during the day and another pair at night.
• Glasses for her strabismus and an eye patch 1 hour per day for eye training.
• And the list goes on… You can it clearly in this 20-second video:
Medically, she is closely followed at the Montreal Children’s Hospital for neonatology, respirology, ophthalmology, and neurology, especially since October 2024 when she had her first (and hopefully last) epileptic seizure. She also sees a physiatrist which is a doctor of physical medicine and rehabilitation.
Let’s go back to spring 2024 for a second: We found out that Sia will be getting a little brother! We heard about blood cord stem cells, did some serious research on that, and decided to give it a try - we would take blood cord stem cells from her brother’s umbilical cord at his birth, then store it in hope that one day Sia could potentially benefit from it. And indeed: her currently 5-month-old little brother Ben and Sia are a 100% match! We got a green light and started the long process of tests and clinical reviews by the Duke Pediatric Brain Injury Cell Therapy Team at the Duke University in North Carolina. It is currently the only facility in North America to offer anything with stem cells related to cerebral palsy. To us, this means HOPE.
Why is this clinical trial and hence this fundraiser important to us?
Sia has an immense joy for life. If you’ve ever met her (or seen her on social media), you know that her smile is contagious. She is extremely affectionate with us, her parents, and we could have never thought how generous she would be with kisses and hugs with her little brother. It makes sense, though - he was generous with her too in offering her his stem cells from his umbilical cord.
We believe that Sia has a great potential to one day be healthy and independent, something that every parent wishes for his or her child, she just might need some help. And we have always done everything we could to give her that hope.
We feel blessed to share her journey with you, knowing that you too believe in her. We appreciate your support and thank you for any contribution that you make.
How the funds raised will be used:
• $15,000 USD ($21-22,000 CAD, depending on the exchange rate) will be used to pay for the clinical trial itself.
• About $2,000 CAD will be needed for the flights from Montreal to Durham, North Carolina, where the Duke University is located.
• $1,000-2,000 will cover the accommodation and the rest of expenses (taxis etc.) for our 5-day stay there - we need to arrive on a Sunday and cannot leave before Thursday.
Sia has been approved for this clinical trial, and it can all happen this summer. We will post updates here and we also invite you to reach out for news anytime you want.
We hope to one day be able to show Sia this fundraiser as a testimony of how many people encouraged her and believed that she matters.
Thank you very much!
Tanja, Samih, Sia, and Benny
