Cruz’s two most significant issues resulting from his syndrome are that he has major Gastro Intestinal problems, and developmental delay. His gastric problem meant that Cruz’s bowel kept twisting and he has sadly been unable to drink or eat anything orally since he was 3 weeks old. His stomach and bowel had not worked since birth. His time in hospital has resulted in numerous surgeries, infections, blood transfusions and many more horrible complications along the way with long periods of time in the Paediatric ICU.
Cruz’s needs are high, and always will be.
His developmental delay issues mean Cruz struggles to reach ALL of his milestones. Cruz can sit unaided, however is still learning to stand and walk. Another area which is extremely delayed is Cruzs’ speech. He is able to say around 30 words now and has been learning sign language for some years. He can sign around 20 words correctly. We had a breakthrough in 2018 with him signing, and he is a lot less frustrated being able to communicate with us now.
Cruz also suffers from a genetic duplication, specifically 12q24.11 to 12q24.33, a tethered spinal cord which will require surgery if and when it starts affecting his lower body functions; GORD (Gastro Oesophageal Reflux Disease) resulting in vomiting every day since birth so far; an oral aversion; feed intolerance; easily susceptible to viruses and infection; difficult to intubate and numerous failed extubations; breathing difficulties requiring oxygen on many occasions; a very high tolerance for opioids which means he is difficult to sedate and keep sedated and requires weaning periods; and Central Sleep Apnea to name a few.
Cruz had life-threatening bowel surgery on 20 February 2015, which so far has proved to be successful and a turning point in our lives. Cruz has since been able to be fed into his stomach via a Mic-key button every 4 hours, and water is given through this button to keep Cruz hydrated. Cruz has also had eyelid surgery to correct his lazy eye and improve his vision. Tammy was able to return to work part-time during school hours while Cruz was at school before having Cruz’s little sister Violet, in the role of caring for other disabled children.
Nathan is self-employed and, due to the expenses associated with giving Cruz as many opportunities as we can and access to as much therapy as is required, Nathan works six days a week with very long hours. Cruz has many outpatient appointments on a weekly basis, along with physiotherapy sessions, speech therapy and horse riding for the disabled. Cruz is now in his third year at school in Year 2. Attending school was a huge milestone for us, and the best part is that he actually loves going to school and is trying really hard there. Cruz has specialised disability equipment at home such as a wheelchair, a walker, supportive seating, a physio mat and a specialised bathing chair.
Both myself and Nathan are unable to become Australian Permanent Residents at this time but are still working on it. Currently, we do not fit into any of the categories in which can apply.
Cruz has also been denied NDIS sadly. Cruz was born in Australia, but that sadly does not make him an Australian - he is still considered a New Zealand Citizen by descent until he is 10 years old. This has proven to be very hard for us in the way that we are not eligible for any funding from the Australian Government to help toward the cost of therapies or equipment for Cruz. Moving back to New Zealand is not an option for us at this time either. It is too risky for us to move Cruz outside of Australia. Given Cruz’s medical and health issues to date, we have a great team of medical professionals who know Cruz well and he remains under their care. Additionally, Cruz’s medical advice to date is that the climate in Queensland is much better for Cruz’s health and wellbeing.
As a result of being ineligible for any assistance, we have to pay for the therapies Cruz needs by ourselves and sadly, nothing labelled “special needs” is inexpensive.
We are proud to say that Cruz is the happiest little boy and can always manage a smile no matter the circumstance. He is getting very cheeky now and has quite the personality. He is so very loved and gives us a lot of love and affection back. He is a lovely little boy who is very caring, he likes to share everything, he wants to be around his friends every day and since becoming a big brother during COVID-19 last year he is the proudest big brother you’ll ever come across!
Our most sincere heartfelt thank you for any donation towards Cruz to help our precious boy who deserves to live life to the fullest. Any donations will be used towards therapies such as physiotherapy, occupational therapy, speech therapy and horse riding for the disabled.
If you would like to follow Cruz’s journey, please find him on Facebook under “Cause for Cruz”.
The Goodwin Family