NEW All About Butterflies Bracelets for Hayley Sonnekus – Cerebral Palsy
Hayley Sonnekus was born on the 2nd of April 2019 after a healthy pregnancy with no complications. She was in NICU for 5 hours because she swallowed some fluids, but during the first two days in hospital she was breastfeeding well, was very alert and just the sweetest baby girl.
️On the 4th of April 2019 everything changed as Hayley became very unsettled. Her eyes started rolling back into her head and she started shaking. The doctor finally arrived, rushed her into NICU where they did blood works and got the seizures under control.
The next morning mom was discharged and both parent went to go and see Hayley. As the doors opened, they saw Hayley being resuscitated as her heart had stopped. After a painful 15 minutes had passed, doctors came in and told them that she is stable, but a very sick baby, and that she was put on 100 percent life support.
That following Sunday they did an EEG and the results showed that Hayley was brain dead. Family, friends, and people from all over the world started praying for Hayley, and miraculously by the next day when they did another EEG, there were signs of life – Hayley is not brain dead, there was activity on the EEG!
After a week she came off life support onto CPAP. She still needed a CT Scan to see what happened to her as she kept on having seizures, some lasting over an hour long.
When the CT Scan results came back it showed that the whole right side of her brain was affected, and doctors needed to do an MRI scan for more clarity as to what is going on, but Hayley was too unstable to be transported.
Days went by before she finally came off the CPAP machine and started breathing on her own, yet again against all odds. She started moving her limbs and after two long weeks, Hayley finally opened up her eyes!
On 29 April 2019 she finally went for the MRI as she was strong enough to be transported. The results showed that the whole right side of her brain had little to no brain function left, and that there is a huge blood clot in the middle-right side of her brain. What they thought were seizures, were in actual fact, multiple strokes.
The doctor said that without the right therapy; there is a huge chance of cerebral palsy, blindness, no function on the left side of her body, and that she might not be able to swallow. Furthermore, if the blood clot doesn’t resolve on its own, Hayley might need a shunt to drain the fluids from her little brain to prevent any further damage.
Since the Occupational Therapist started working with Hayley, she can move all her limbs like she should. With all the therapy up to date, she is also moving her left side, although it`s a bit weaker then the right side. With the Speech Therapist she is now able to suck and swallow, and she does not need a feeding tube anymore. Therapy was the best decision and course of action as recommended by the doctors.
The Current Situation
As soon as Hayley gets out of hospital (in a few weeks), the medical aid will only pay for one therapy session a week, but she needs therapy every day for the next 6 months. She will need special medical equipment for home as doctors predict that there is a big chance that she will be a child with special needs.
Financially this puts a lot of strain on the family as they simply do not have money to pay for all the therapy and medical equipment she might need down the line.
Costs involved will be the following everyday for 6 months:
- Occupational Therapist – R700.00 per session
- Speech Therapist – R300.00 per session
Medical Equipment needed:
- Breathing and oxygen monitor called Owlet Smart Sock which is R8000.00 – she will need this before being discharged as she has silent seizures which can only be picked up on the monitor.
- Leg and arm braces – price unknown – her grandparents are getting her a special cot that picks up her movements, so if she has a normal seizure it will send an alert.
- A special pram and car seat which has to support her spine and her head.
Like and follow Baby Hayley on Facebook for live updates on her progress.
It has been an emotional ride and Hayley and her family still has a long way ahead of them. Please help us to raise funds for baby Hayley to give her a chance at a better quality life and brighter future.
Together we can change her world, one bracelet at a time.
Fundraising for Hayley Sonnekus
The All About Butterflies Bracelets for Hayley cost R30 each; consisting of emerald green pearls, white wooden beads & crystals – with a Diamante-butterfly, a Made-with-love Butterfly, or Butterfly charm. To place and order, contact the agent in your area or shop online. Alternatively, please consider a donation. Any and all donations welcome.
Update: It is with a heavy heart that we inform you that Hayley grew her angel wings, 19 June 2019 at 17:45. The “All about Butterflies Bracelets” will be available only until 30 July 2019.
“Life can be challenging, but always remember that it’s all about your attitude. You are beautiful in your own way, just like butterflies.”