Hi, our names are Tammy Reed and Nathan Goodwin and we have a gorgeous 5-year-old son called Cruz. Cruz has a rare chromosomal disorder called 2q37 Deletion Syndrome. This syndrome has resulted in Cruz (and our family) having to live in hospital for the first year of his life, with many short stays after that. There are only around 100 reported cases of this syndrome worldwide.
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 means Cruz struggles to reach ALL of his milestones. Cruz can sit unaided, however is still learning to crawl, stand and walk. Another area which is extremely delayed is Cruzs’ speech. He is able to say around 20 words now, and has been learning sign language for some time.We have had a breakthrough in 2018 with him signing back quite a few words, 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 a sleeping disorder 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 3 hours, and water is given through this button to keep Cruz hydrated. Cruz has also had eye lid surgery to correct his lazy eye and improve his vision. Tammy has not been able to return back to work since having Cruz, as caring for him is a 24 hour / 7 day a week job. 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 attends a Special Needs day care twice a week for around 4 hours per day; and he also attends a mainstream kindy twice a week now where he stays 4 hours per day and has an Inclusion Support Worker with him to help him be included in all activities and move him around the kindy. Cruz has specialised disability equipment at home such as a wheelchair, a walker, supportive seating, a physio mat and a special 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 in to any of the categories in which can apply. Cruz was born in Australia, but that sadly does not make him an Australian - he is still considered a New Zealand Citizen by decent 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 towards therapies or equipment for Cruz. Moving back to New Zealand is not an option for us at this time either. It is far 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 little 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 is gentle with others and I can already see what a loving boy he is becoming.
Our most sincere heart felt 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, horse riding for the disabled and possibly music therapy as
Cruz is developing a love for music. Thank you xxx
To Donate to Cruz Goodwin, please use the form below. Thank you for your generosity.
Sunshine Butterflies is a boutique, not- for-profit provider that has built a network of flexible services to provide information, support, resources and programs to individuals and families living with a disability in a safe and happy learning environment. Sunshine Butterflies...