Hi everyone, I am raising funds for my son Noel Quinn. As a mother dealing with his severe health issues and other related challenges is the most painful to bare, yet he has taught me a great lesson in life. I respect him and I love him dearly. I often wish it was me instead of him. A very humbling experience. Noel is 26 years old. From March 2017 to February 2019, Noel has undergone 11 operations, hospitalized more than that. From 75 kg his weight-loss is significant, currently at 58 kg. Noel’s life has changed drastically from being so boisterous and mischievous to suddenly dealing with critical health issues. He has had to adapt to daily challenges of handling immense pain, sickness, lack of energy, work challenges that threaten his livelihood – yet the most amazing and positive guy I have ever seen; who remains fun-loving. He never gives up continues to persevere. With every upcoming operation he tells himself “this one is going to make me better”. His greatest desire is to get his health and life back so that he can give back to society, and grow in his talent and passion as a cake artist. The traumas he endures is a “double-whammy”. From an exuberant person, he was reduced to traumas in both his health, i.e. the impact of his ongoing illness and having a knock-on effect on his career and livelihood this last 2 years.
The knock-on effect has resulted in being unable to be as reliable as he needs to. The impact has been severe where he has had to change jobs 3 times, yet all those companies hold him in high esteem. He is an asset to everybody. He is gifted. He had to take significant drops in salary in order to keep work. His ability to try maintain a reasonable status quo and strive to give his best at his work continues, no matter how painful - this is admirable.From severe headaches evolving into migraines suffered in 2016. His hands were constantly “shaking” rending muscle coordination weak. This affected his ability to work effectively as the work is delicate. Early 2017, Noel was referred by the family GP to ENT Specialist who ran a MRI Scan suspecting nasal/sinus blockage.
ENT Specialist referred Noel to Neurosurgeon. Noel was urgently admitted to NetCare Olivedale Clinic for further tests on the 6th of March 2017 (1) Lumber Punch (2) CT scan (3) EEG amongst (4) bloods, amongst others. Final diagnosis: “Arachnoid Cyst in the posterior fossa” (lower back of his head above spine). Noel’s back of his skull would have to be cut open. Noel was admitted as a PMB condition to surgery (23 March 2017), Operation took between 4 1/2 – 5 hours which was nerve wracking for the family. He was in ICU for 48 hours. In layman’s terms, the cyst could not be totally removed as it was attached to the brain membrane. A “shunt” was inserted to assist with the release of excess brain fluid from the back of his head. Shunt purpose is to monitor pressure measurements and release brain fluid when it reaches certain high reading. A Titanium plate was inserted into the back of his head as support mechanism for his head muscles. The shunt’s tubes were inserted from inside his head from the remaining cyst sac to his right shoulder and wound through to his abdomen so that the fluid could drain out naturally. Initial period in hospital 6 weeks with complications and further surgery.
In April 2017 Noel underwent another emergency operation (Number 3) as a result of tubes rejecting. Infection in blood test were very high. The tubes were removed and was found to have had a “perforation” which was leaking all the toxins from the brain and spinal fluid into his body, causing his seriously condition. New tubes were inserted. To fast forward: from April 2017 to August 2018, Noel was admitted from time to time to hospital for further operations due to shunt /tube problems/ major infections.
Noel continued living with excruciating pain and infections. Antibiotics became his “staple food” with pain-killers. In October 2018 Noel’s muscular pain throughout his body intensified and both legs began collapsing randomly without warning, more than once a day. The first Neurosurgeon advised he could nothing more for Noel, as it was not related to his work. Through my medical aid and their assistance, we located a Neurologist who was very concerned. He consulted with another Neurosurgeon. Noel was admitted to Sandton MediClinic for 2 weeks for observation. Tests were being run by this team, MRIs, CT scans, bloods, Eeg’s, etc. Diagnosis: spinal fluid pressure very high. Operation was performed end October/November 2018 to insert Spinal Lumbar Shunt as well as treat serious sepsis developed on the cut by his collar bone.
The Neurosurgeon advised that the Titanium plate was infected and warned us that if this operation did not clear the infection, Noel would have to have the Titanium plate removed. This Neurosurgeon would not be able to perform this operation has it was not his speciality due to the technology used. Noel returned to his new work shortly after the operation hoping it would be a success as he was under constant follow-up treatment with the wound care clinic.
Unfortunately The head and neck wounds became seriously infected. The tissue was taking long to close and the titanium plate could be . A 3rd Neurosurgeon was consulted early March 2019. He found two Titanium plates, hence infected head and neck areas. He is trying to avoid removing the Titanium plate because the operation is dangerous. He took holistic approach and discovered that all previous operations, medications and antibiotics left Noel’s body with hardly any immune / critically low haemoglobin count therefore Noel’s body is unable to fight infections. An operation would have been cataclystic at that stage. Treatment was given to boost and build up immune by plasma which was extremely costly. Noel was in Linksfield Netcare Clinic for a week and discharged mid-March. Improvements showed but now seems a possibility of it not repairing 100% due to infections inbedded in plates/brain. A further operation may seem imminent to remove two plates. Noel is awaiting to consult with the Neurosurgeon soon.
EXPENSES: Noel is under my medical aid currently. The medical aid option is a mid-option therefore only covers at 100% IF the services are the medical aid service providers, if not, Member/patient is liable. When seeking the best care for your child or having been referred to the medical team, all Neurosurgeons are not all under my medical option, so it is extremely difficult. We do go into negotiation, but at the end of the day, they are the Specialists and have a right to charge their rates. After all, our lives are in their capable hands. Then you feel guilty about asking them to charge at the medical rate because they earn their living, so its so hard. You feel as though money is more important that your child’s life, and this so absolutely untrue.
DONATIONS: Total R500,000 would be sincerely grateful for. Calculations were done in respect of costs incurred between mom, dad and Noel in terms of: (1) Mom raising 3 separate loan accounts at various times to pay providers and to assist with Noel’s maintenance whilst he was unable to work for certain periods during operations and post-op. My current debt for these specific loans conservative at R200,000. This is not a joint household as there was a divorce before Noel’s illness. (2) Noel and his father’s expenses were joint, i.e. R300,000 approx. as Noel was not paid for 6 months as a result of his illness. After being able to work again, he was offered a job, and accepted a job less than half of what his usual earnings before, because economy tough. The R300,000 includes the short-pay of salaries for 13 months/no income, medical loans which they also raised including basic living expenses and petrol going to the various medical centres, as some of them are far from home.