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Help me stay with my son

£5,033 of £7,000 goal

Raised by 196 people in 17 months
Created August 21, 2017


My son

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


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Update 21
Posted by Luke John Timberlake
8 months ago
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Hello please can you take 30 seconds to vote please it's free this would mean to the world us after the last 4 years we have been through

https://m.facebook.com/story.php?story_fbid=10160289693200608&id=854340607 x
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Update 20
Posted by Luke John Timberlake
16 months ago
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So Tristan has not been very well since early hours Saturday morning being transferred to John Radcliffe and back again.

Tristan has been spiking high temperatures since Saturday as he has another infection. On top of that he has a skin rash Tristan can not stop scratching he is covered evreywhere which is seperate to the infection they can't figure out what it is so we are also on another antibiotic, 2 types of antihistamines and 2 creams and a steroid cream as the rash does not seem to be getting better.

The doctors want to refer Tristan to immunology but they can't yet as they will not get accurate results as he is on very strong anti biotics and a few of them they don't get why he is picking up infections still.

We also found out that Tristan may only be allowed to try tiny bits of food but in 6 months time and that's still not defiant he will be tube fed for about a year or 2 they are considering putting a temp peg into his stomach which means more surgery this is devastating for us as our whole routine is going to be changed . It took 2 years to get Tristan to eat food and he has a very select diet so all this work has just be undone. Tristan has very good understanding so going through this change is going to be extremely difficult.

It just seems to be one thing after the next we can't thank you all enough for your support.
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Update 19
Posted by Luke John Timberlake
16 months ago
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I didn't have a very good night with tristan last night he did not sleep just crying in constant pain, he has broken out in a really itchy rash which seems to be getting worse and piriton is not helping.

Tristan is still suffering a huge array of infections and he is having some really bad moments. We are currently being moved around allot and are currently on our fourth hospital in a week.

We are still waiting on bloods to see what antibiotics to treat it with tristan is still continuously spiking a temp which doesn't seem to be reducing.

Sorry there is not much of an update but we are both extremely tired and really struggling. We are taking it in turns giving updates.

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Update 18
Posted by Luke John Timberlake
16 months ago
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Tristan didn't have a very good night crying and spiking temp about 4 am this morning, after a nightmare of a day yesterday.

Tristan got blue lighted to John Radcliffe this morning so they can put in a different line but as he keeps spiking temperature soon as calpol is out of his system they are unsure if his pic line which has broken causing the infection if that's the case they will need to pull the whole thing out and try to put a line on the other side instead of just repairing, if that fails they are going to put something into his groin. The other option was through the neck and chest but as he's has some complex issues they are at a big risk and can't touch the area. They also think his medinitisit could be causing the temperatures which means he will need to be put on even more antibiotics.

Dannielle is still currently waiting for Tristan to go down, I am currently on my charity walk in London.
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£5,033 of £7,000 goal

Raised by 196 people in 17 months
Created August 21, 2017
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