When my son was born, we new nothing. We had been told to expect a perfectly healthy little boy; and yes, we had all of the appropriate tests. They were fine. We were projected a one in 100,000 chance of Down Syndrome, and no heart condition was detected. Which appears more a consequence of negligence than it does it does bad luck; as we are told they are very easy to detect.
When Tristan entered the world, it was obvious that he had some unusual features. But being perhaps the newest father in the world at that very moment, I never believed anything was out of the ordinary.
Nurses in a variety on technicolor tunics hijacked our yellow, obviously jaundice infant; and bundled him onto a trolley in the corner of the room, where he was utterly obscured from our sight. A short Indian doctor, perhaps in his mid-to-late fifties walked in, parting the nurses like Moses, and methodically examined a child no more than five minutes of this earth. A child who new nothing of what was happening; and to this day, cannot truly comprehend what is wrong. The doctor inspected his toes, his eyes, his joints and his ears. He inspected every orifice and cavity; appendage and feature with his back to us. The moment every parent nightmares over. The sequence every mother dreads. And the moment every father assumes, will never happen to them.
The doctor turned; removed his gloves from both hands, and paused for a moment. He took a deep breath, and said: “your son has some features of Trisomy 21”. Dannielle and I looked at each other; neither of us computing or comprehending what we were being told. Neither of us being familiar with the term being used, and growing frustrated at such a vague choice of words. We didn’t know what to expect? Had we won something? Was our son dying? What the hell was Trisomy 21? An inquisitiveness which we both deserved answers to, but equally didn’t want clarity on. A curiosity which was shattered into a million pieces by the doctor quantifying his terms into something easier to understand; but harder to swallow: “It would appear that your son has Down Syndrome”.
A sequence of words, intertwined with a pitch, which would reverberate within my ear canal for months. A sentence which would follow me to the bottom of bottles, and into the passenger seat of many a drug dealers cars. It would carry me into the ears of therapists, duty nurses…and even Samaritans. It would bounce around my brain like Pac-Man as I slept, and suffocated any thought I attempted to have about anything else. A suffocating panoply of emotions which was felt in equal measure by both of us, but expressed quite differently. An intimidating and overwhelming diagnosis routed in ignorance of the condition. An ignorance which thankfully eroded over time, as my understanding and grasp of the topic developed.
But as time went on, and we came to terms with what had been heaped on us; a seemingly perpetual array of bonus material was added to the stew. Our beautiful son, with which we had called Tristan, from the Shakespeare play: Tristan and Isolde; was soon to have a serious heart condition. A condition which underwent very invasive open heart surgery months later. Then he was partially deaf…which required further surgery. Then he was partially blind…which required further attention, and made further hardship inevitable. Atrioventricular septal defect; grommets; tonsils; relentless infections; low respiratory function; low muscle tone; underdeveloped air canal; portage groups; social worker; ENT’s; physiotherapists; paediatrics; cardiologists; speech therapists; audiologists; respiratory specialists; consultants; visual impairment specialists ; orthopaedics; ophthalmologists and consultants from every corner of the empire.
Only for us to recently be told that Tristan has: ‘long segment Tracheal Stenosis’; an extremely rare disease which if left untreated would have killed him. A disease completely unrelated to any of his other issues…and is merely the ramifications of bad luck. Tristan is currently in Great Ormond Street and has undergone a procedure only performed within this hospital. A procedure so dangerous that we have been close to losing him on a couple of occasions over the last few days. The surgery has been a success, however, many issues have arisen as a consequence of the surgery. The area around his lungs has filled with air where there shouldn’t be air; and he has developed a fever, which needs to be controlled before further procedures to stabilise him can be performed. He is not breathing on his own, and the doctors have found sedation unusually difficult. If they sedate him too much, his stats drop off violently and rapidly. If they sedate him too little, he fights it and pulls at the cables which are keeping him alive. Two nights ago he rose late at night and removed a vital tube from his neck, causing the whole CICU into emergency lockdown, with Dannielle and myself locked outside.
We are currently living at Great Ormond Street, and we honestly have no idea how long we are going to be here. It could be a month, It could be a year…we don’t know. I have had to leave my job in order to be here, and I don’t find it embarrassing to point out that I have spent a few days in a psychiatric hospital over the stress.
In summary, we need help. A request which I am not usually comfortable making. Especially as anyone who knows me will know that I have never struggled with money. But find myself in an unusual situation that requires the attention of us both…and requires enough to warrant some serious financial discomfort. Living in central London under these constraints has proven near impossible; and short of one of us being forced to leave, I don know what else to do?
On the 9th of September I will be walking from Putney to Canary Wharf. A walk which is usually called the Thames bridges challenge, and one which I have done every year for the last three years. But this year I will be joining unofficially, as I simply cannot afford the entrance fee; and will be extending the planned distance by an additional 7km to ram home the severity of our situation.
Please know that asking for help is something I don’t do often; and this request requires allot of pride swallowing by myself. But if you don’t wish to give to the Go-fund-me page I have provided; please give to Great Ormond Street.
Thank you for reading this.
Luke J Timberlake
- Sanford Pass
- Victoria Heaton
- John Cabral
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