Any help would be so very appreciated.

[Nice One Cyril]

Daniel will probably have to get the ok from Uncle Joe, before writing the cheque.

 

[degoose]

Hi all as some of you know I have a Mollie, most dont know that I also have an Autistic 4 year old called Ted or as Mollie calls him Tedboy. Ted is a non verbal Autistic and as you can imagine the challenges are great, the chief of these for our family right now is sleeping.
Ted has only slept through the night a handful of times in the 4 years he has been alive, he wakes up and is inconsolable, he always wakes up around the same time/s everynight. We have people on it but the powers that be simply tell us sleep issues are an Autistic thing. When he does sleep he has to be in an enclosed space he gets very upset if he doesnt feel safe, we have managed to retro-fit his original cot and that has been holding out for a good while now, but unfortunately tonight he has basically destroyed it.
We have tried him 3 times in a normal bed and it has gone so badly each and every time and always ends with him standing at his stair gate screaming and becoming so dis-regulated he has to be taken out and calmed down. No one has managed to sleep well at all, and with a little girl in heart failure we have to make sure she gets sleep.
We are in communication with Family Fund but the waiting list is currently at 14 weeks and speaking to other families FF are helping fewer and fewer families.
Ill be honest I'm scared as he wont let anyone else deal with him but me, I am normally very good at going without sleep, but this is going into car crash territory.
Specialist beds are so expensive I am not really sure how companies expect your normal person to afford one.
We as a family dont ever ask for help, but now with this and the impact it WILL have in the coming days/weeks I need to see if my fellow Spurs family can help us? I know we are all in a bad mood and dont know whether we are coming or going, and the cost of living is fucking us all over, but literally anything would help.

Thankyou.

Help us buy a new bed for tedboy, organisiert von Chelsea Marshall

***EDIT*** wonderful beautiful people we are blown away by your generos… Chelsea Marshall braucht deine Unterstützung für Help us buy a new bed for tedboy

www.gofundme.com

Hi just on a side thing but have you tried melatonin gummies. People with autism and ADHD struggle generally to sleep and do not get enough melatonin. I have ADHD (I don't talk about it much) but you could always try some extra melatonin which can help the child feel more drowsy and possibly sleep through at least 5-6 hours. These are the ones i use

I get your situation as well but with different struggles, my son has autism and it can produce a lot of complications (he literally just now had a meltdown) and a lack of sleep can cause even more issues. Well done to all the spurs fans here as well with the donations.

 

[neogenisis]

Hi just on a side thing but have you tried melatonin gummies. People with autism and ADHD struggle generally to sleep and do not get enough melatonin. I have ADHD (I don't talk about it much) but you could always try some extra melatonin which can help the child feel more drowsy and possibly sleep through at least 5-6 hours. These are the ones i use

I get your situation as well but with different struggles, my son has autism and it can produce a lot of complications (he literally just now had a meltdown) and a lack of sleep can cause even more issues. Well done to all the spurs fans here as well with the donations.

Our paediatrician isnt sure on prescribing Melatonin as he has no problem falling asleep, its the waking and what happens when he wakes. Friends have told us about the gummies and that we should give them ago, but medically we are told Melatonin probably wont be beneficial to him. Having said that the weight of anecdotal evidence is making me think we should give it ago.

 

[degoose]

Our paediatrician isnt sure on prescribing Melatonin as he has no problem falling asleep, its the waking and what happens when he wakes. Friends have told us about the gummies and that we should give them ago, but medically we are told Melatonin probably wont be beneficial to him. Having said that the weight of anecdotal evidence is making me think we should give it ago.

Yeah i had heard that before about melatonin before but there are actually two types though, long lasting and fast dissolving. I would say it is worth a punt as my issue is not falling asleep although that is because i listen to podcasts to doze off but my main issue was continued sleep as i like many others only last a couple of hours and then wake up. I was actually recommended them by my ADHD coach who has 2 autistic children who takes them as they had the same issue.

Perhaps if you are not too sure then you could try the 5mg https://www.biovea.com/uk/product/d...y---60-gummies/?deptid=22&cid=23699&mid=0&kw=

 

[neogenisis]

Yeah i had heard that before about melatonin before but there are actually two types though, long lasting and fast dissolving. I would say it is worth a punt as my issue is not falling asleep although that is because i listen to podcasts to doze off but my main issue was continued sleep as i like many others only last a couple of hours and then wake up. I was actually recommended them by my ADHD coach who has 2 autistic children who takes them as they had the same issue.

Perhaps if you are not too sure then you could try the 5mg https://www.biovea.com/uk/product/d...y---60-gummies/?deptid=22&cid=23699&mid=0&kw=

Ordering some, see where we go. Thanks for the advice.

 

[Meercat]

Chipped in a little. Hope this is taking some of the strain off you guys. There’s some decent folks around these parts it seems…

 

[coysjod]

Congrats on reaching the goal! Chipped in a little bit anyway as I reckon you have more holes to fill in your situation. Lots of love to the whole family

 

[Dougal]

Donated. Great that you’ve passed the target. But there’s always going to be something else that will be needed. Hopefully you’re looking after yourselves too.

 

[neogenisis]

Thankyou all so much guys, the over will go towards a new mattress, sheets and a weighted blanket etc.

 

[USAYID]

Donated from across the pond.

It's already been mentioned, but the extended release melatonin may definitely help, and another thing you should ask your doctor about which may sound odd, is blood pressure medicine like Guanfacine. Not sure if you have a developmental pediatrician, but either them or your regular pediatrician can prescribe it if appropriate, to help keep him calm and it would also help him sleep through the night. May be worth checking into if melatonin by itself doesn't help.

 

[G Ron]

Put a score in the coffers as it’s the least I can do.

My youngest (3) is extremely challenging although nowhere near what you’re experiencing with Ted. It’s draining just getting through the days and dealing with the meltdowns, let alone having to contend with the disrupted night time routine too. I really feel for you both and wish you all the luck in the world that things eventually calm down and Ted starts sleeping through.

Love to your family - what you are dealing with and how you’re managing the adversity is inspirational.

puts the shit show that is spurs into perspective. There’s more to life than football after all

 

[neogenisis]

Put a score in the coffers as it’s the least I can do.

My youngest (3) is extremely challenging although nowhere near what you’re experiencing with Ted. It’s draining just getting through the days and dealing with the meltdowns, let alone having to contend with the disrupted night time routine too. I really feel for you both and wish you all the luck in the world that things eventually calm down and Ted starts sleeping through.

Love to your family - what you are dealing with and how you’re managing the adversity is inspirational.

puts the shit show that is spurs into perspective. There’s more to life than football after all

I really do appreciate the outpouring of love and very kind words that have come our way.
I dont see anything I/we do as inspirational, Mollie was born with only half a heart, that was nobody's fault and at the time was a 1/100000 shot (I know those odds have dropped for baby's being born now), we roll with it and do the best we can for her.
Ted was born and very early my partner picked up on things that I didn't see, everyone said we needed Ted to get older and see how he grows, but my partner was always *I'm telling you now*.
Ironically it was during a cardiac appointment for Mollie that I couldn't attend and the Mrs had to take both Ted and Mollie solo that she mentioned casually to our Cardiac consultant about Ted and it all really took off and things happened so quickly and the diagnosis came.
Ted is a pure soul, I mean this boy loves life he enjoys everything. And while he struggles with SO many things many kids take for granted, he is bursting with happiness and joy. I am protective of Mollie, of course I am, but my Ted, that is a something alot more primal as he doesnt live life like we live life, he doesnt see 99% of what we see and how we see it and I %100 REFUSE with every fibre of my being to let him fall through the cracks, I am his Dad and we are his strongest advocates, I wont let him down and I will not let anyone taint his pure loving soul.
I dont see it as inspirational, though people thinking that gives me heart and more determination, I see it as me being the best Dad and my Partner the best Mum and together the best parents we can be to Mollie and Ted, because the thing that keeps me up at night (other than Ted and Spurs) is what would happen to my perfect little goblins if we were not here.

The donations that you guys have made have solved a massive problem that has always been on the horizon as night is the worst time of the day for us and Ted is really hard going at bedtime.

So from the bottom of my little families hearts, thankyou all.

 

[McFlash]

I really do appreciate the outpouring of love and very kind words that have come our way.
I dont see anything I/we do as inspirational, Mollie was born with only half a heart, that was nobody's fault and at the time was a 1/100000 shot (I know those odds have dropped for baby's being born now), we roll with it and do the best we can for her.
Ted was born and very early my partner picked up on things that I didn't see, everyone said we needed Ted to get older and see how he grows, but my partner was always *I'm telling you now*.
Ironically it was during a cardiac appointment for Mollie that I couldn't attend and the Mrs had to take both Ted and Mollie solo that she mentioned casually to our Cardiac consultant about Ted and it all really took off and things happened so quickly and the diagnosis came.
Ted is a pure soul, I mean this boy loves life he enjoys everything. And while he struggles with SO many things many kids take for granted, he is bursting with happiness and joy. I am protective of Mollie, of course I am, but my Ted, that is a something alot more primal as he doesnt live life like we live life, he doesnt see 99% of what we see and how we see it and I %100 REFUSE with every fibre of my being to let him fall through the cracks, I am his Dad and we are his strongest advocates, I wont let him down and I will not let anyone taint his pure loving soul.
I dont see it as inspirational, though people thinking that gives me heart and more determination, I see it as me being the best Dad and my Partner the best Mum and together the best parents we can be to Mollie and Ted, because the thing that keeps me up at night (other than Ted and Spurs) is what would happen to my perfect little goblins if we were not here.

The donations that you guys have made have solved a massive problem that has always been on the horizon as night is the worst time of the day for us and Ted is really hard going at bedtime.

So from the bottom of my little families hearts, thankyou all.

Beautiful post mate, and so happy that this little community once again came together to help a fellow yid.
We may all bicker and bitch, moan and argue but when it comes down to the important things, we look after each other.

As a side, how is the beautiful little Mollie doing? She's a tough little cookie, it must be in the genes. X

 

[neogenisis]

Beautiful post mate, and so happy that this little community once again came together to help a fellow yid.
We may all bicker and bitch, moan and argue but when it comes down to the important things, we look after each other.

As a side, how is the beautiful little Mollie doing? She's a tough little cookie, it must be in the genes. X

Mollie is stable, but you dont tend to shake off heart failure >< she is still on the transplant list but is as good as she can be right now. She has been suffering periodic Hypoglycaemic episodes which have seen her collapse twice, a Dr at the QA in Portsmouth diagnosed Idiopathic Ketotic Hypoglycaemia, which is fancy talk for ermmm we dont know why this is happening.
2 months ago during a routine paediatric appointment she collapsed despite eating an hour before she went out, the Dr called GOSH there and then and demanded it become non idiopathic. She has had a couple of basic tests that didn't reveal alot but the GOSH Drs think its circulatory which comes under her heart condition, if proven it would push her up the transplant list. So we are being admitted to Southampton soon for a CT and some other studys, if nothing can be found we will need to decide wether we want something implanted to record data about her heart during these episodes to try and understand it, this would need to be under a General though which is so dangerous for her. So we will need to see.

 

[G Ron]

Mollie is stable, but you dont tend to shake off heart failure >< she is still on the transplant list but is as good as she can be right now. She has been suffering periodic Hypoglycaemic episodes which have seen her collapse twice, a Dr at the QA in Portsmouth diagnosed Idiopathic Ketotic Hypoglycaemia, which is fancy talk for ermmm we dont know why this is happening.
2 months ago during a routine paediatric appointment she collapsed despite eating an hour before she went out, the Dr called GOSH there and then and demanded it become non idiopathic. She has had a couple of basic tests that didn't reveal alot but the GOSH Drs think its circulatory which comes under her heart condition, if proven it would push her up the transplant list. So we are being admitted to Southampton soon for a CT and some other studys, if nothing can be found we will need to decide wether we want something implanted to record data about her heart during these episodes to try and understand it, this would need to be under a General though which is so dangerous for her. So we will need to see.

Mollie is clearly an absolute warrior and you and Mrs Gensy are her rocks.

I hope and pray that she is elevated up the transplant list and receives the urgent treatment she needs ASAP.
I can’t even begin to imagine what you and your wife are going through as parents as it’s your worst nightmare to see your kids suffer. It speaks more about you both as a couple that you can stay so strong and determined though challenges no child / parent should have to face.

Keep us all posted as we’re all here for you, thinking of you and ready to help in any way we can.

 

[BuryMeInEngland]

Mollie is clearly an absolute warrior and you and Mrs Gensy are her rocks.

I hope and pray that she is elevated up the transplant list and receives the urgent treatment she needs ASAP.
I can’t even begin to imagine what you and your wife are going through as parents as it’s your worst nightmare to see your kids suffer. It speaks more about you both as a couple that you can stay so strong and determined though challenges no child / parent should have to face.

Keep us all posted as we’re all here for you, thinking of you and ready to help in any way we can.

@G Ron put it perfectly. @neogenisis , you and your wife are the perfect parents and just what your beautiful children need. Keep all of us in the picture!

 

[soflapaul]

I really do appreciate the outpouring of love and very kind words that have come our way.
I dont see anything I/we do as inspirational, Mollie was born with only half a heart, that was nobody's fault and at the time was a 1/100000 shot (I know those odds have dropped for baby's being born now), we roll with it and do the best we can for her.
Ted was born and very early my partner picked up on things that I didn't see, everyone said we needed Ted to get older and see how he grows, but my partner was always *I'm telling you now*.
Ironically it was during a cardiac appointment for Mollie that I couldn't attend and the Mrs had to take both Ted and Mollie solo that she mentioned casually to our Cardiac consultant about Ted and it all really took off and things happened so quickly and the diagnosis came.
Ted is a pure soul, I mean this boy loves life he enjoys everything. And while he struggles with SO many things many kids take for granted, he is bursting with happiness and joy. I am protective of Mollie, of course I am, but my Ted, that is a something alot more primal as he doesnt live life like we live life, he doesnt see 99% of what we see and how we see it and I %100 REFUSE with every fibre of my being to let him fall through the cracks, I am his Dad and we are his strongest advocates, I wont let him down and I will not let anyone taint his pure loving soul.
I dont see it as inspirational, though people thinking that gives me heart and more determination, I see it as me being the best Dad and my Partner the best Mum and together the best parents we can be to Mollie and Ted, because the thing that keeps me up at night (other than Ted and Spurs) is what would happen to my perfect little goblins if we were not here.

The donations that you guys have made have solved a massive problem that has always been on the horizon as night is the worst time of the day for us and Ted is really hard going at bedtime.

So from the bottom of my little families hearts, thankyou all.

Ted, Mollie and your partner are all lucky to have you in their lives much as you are lucky to have them in your life.

 

[cabinfever]

Donated. Great response!!
Dermot

 

[Hoddlegenius]

Amazing to see the support on here, donated, I hope you get everything you need and it helps you all gain some much needed rest!

 

[pablo73]

Donated, your story is inspirational even if you don't think so! Hope it helps and that you get what you need to make life a little bit easier.

All the best to you all.