Help Baby Hendrix Come Home

My beautiful warrior of a Nephew Hendrix entered the world on the 19th of September via emergency C Section at just 32 weeks. Hendrix is a sweet and strong little boy and my sisters first child. He was born premature and with a genetic condition that has caused early fusion of the sutures in his skull. This has caused Henny's airway to be almost non existent. We now know Henny’s condition to be Crouzons Syndrome, or Craniofacial dystosis.

During Hendrix’ short few months of life he has endured more than most of us experience in our entire lives. Including being on and off ventilators due to his tiny airway (making him unable to breath on his own for extended periods of time), CT scans and MRI’s, blood transfusions, countless heel prick blood tests, a few close calls when he was unable to breathe at all and required emergency intervention. He has had cameras forced down his nose and throat (which without a decent nasal passage is incredibly painful for him), a surgery to insert balloons in his nasal passage and widen the space & fit a nasopharangeal airway device (which unfortunately failed due to Henny's complex airway), an operation to stitch one third of his eyelid shut as he doesn’t have deep enough eye sockets to hold them in, another operation to do the same on the other eye, the absence of one of his ear canals, dislocated elbow joints, and most recently he underwent a major life changing operation to receive a tracheostomy in order for him to be able to go home and breathe on his own.

The tracheotomy surgery was the end of the line avenue for breathing interventions without being hooked up to a ventilator his whole life. Surgeons create an opening through the neck directly into the trachea (windpipe) which allows direct access for the tracheostomy (breathing tube) to be inserted. More importantly the tracheostomy means that Hendrix will now require around the clock care, 24 hours a day, seven days a week for at least the next six years; until he is big enough to have his mid face surgery which will open up his nasal airway. My sister and her partner are exploring all avenues of care, funding and nursing available to them through the government, but unfortunately these things take time to receive. Henny has spent his entire life in the hospital, it’s time for him to leave hospital and start life outside of the hospital walls. But without any funding for nursing and overnight medical care approved as yet, this means that Olly & Hayley be taking unpaid leave in order to be Henny's full time carers. They will take shifts day and night to monitor Hendrix’s condition until funding is approved for “in home nursing care”. This might be one month, or it might be three months. We’re asking as many people as possible to help bring Henny home and help relieve some of the financial stress for my sister Hayley, her Partner Olly and their precious son Hendrix in this hard time. They have a mortgage to pay, bills, and general living expenses with no capacity to have paid leave in the immediate future. $5,000 will cover basic expenses for up to 5 weeks which is what they’re hoping to raise on this Go Fund Me page. $10,000 will cover it for 10 weeks, and anything over would help give them something to fall back on should any more time need to be taken off work.

This is just the beginning of a very long road for Hendrix and my sisters family, he has a skull surgery coming up in two months to alleviate the pressure on his brain from the early fusion of the sutures in his skull, and then another major skull surgery at 6 months to reconstruct the shape of his head & provide some more protection for his eyes. Hayley and Olly are hopeful that these surgeries are all Hendrix will need in the near future, however Crouzon Syndrome is very complex & affects the bones in every child differently. Hendrix has been a superstar warrior right from the very start and comes out stronger after every surgery. Mum and Dad are also doing as well as they possibly can under the circumstances and are dedicated to creating a life in which Henny can thrive. Being able to raise $5000 will make a big difference and will allow Hendrix to finally leave hospital and come home for Christmas. So again, in the name of Christmas generosity, we’re asking anyone who is willing and able to help them reach raise $5000 and let Henny have his first Christmas at home with his loving family.

Hayley, Olly, Hendrix and the extended family thank everyone in advance for opening their hearts and helping them in their time of need.