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Jennifer Trust





Due to unexpected events and circumstances beyond our control I have had the privilege of spending much more time with Owen than anticipated.

 Thursday 16 January 2003
A week ago Trevor and I arrived home from holiday to find daughter Nicola panicking as she had a rash and felt little movement from baby.  She has visited Princess Royal Hospital, Haywards Heath West Sussex daily and been monitored, all is ok now, rash gone and midwife has been marking notes as ‘baby sluggish’ for some time, and it’s also going to be a big baby.
Monday 10 February
Heard today that my line dance friend Diana who has just returned from the USA is very ill in hospital.  They suspect DVT and I am very worried about her especially as the baby is due any day now.
Tuesday 11 February
Nic went into hospital to be induced but was sent home because hospital was busy. 
Wednesday 12 February
Nic told to go into hospital again at 7.30 this morning to be induced but waters broke at 3.00 am.  Paul phoned 6.00 pm to say little happening, they are to put her on drip and if nothing happens by morning she will have a caesarean.
Thursday 13 February
Owen James born 10.16 am by emergency caesarean, and weighing 9lb 6oz (4.246kg).  We visited at 2.00, he is a big chap and we are especially pleased all ok and no sign of the Spina Bifida Trevor has, resulting him being in a wheelchair for the last 10 years.  I have been really worried, I expect like most mums, that something would go wrong with either Nic or the baby so I am relieved that all is well.
Saturday 15 February
Spent the day in hospital with Nic and Owen, changing his first dirty nappy.  Nic is very tired having had very little sleep and being woken in the night to feed, and also having trouble breast feeding.
Sunday 16 February
Again I spent the day with Nic, twice Owen was taken away for tests as they were worried he was ‘floppy’ and now weighs 8lb 8oz.  They have allowed Nic to bottle feed and told to do so every 3 hours.  Owen seems to like the bottle and wants more than we are told to give him. 
Nic is still very tired getting only 3-4 hours sleep at night, and she had 2 nights without sleep before Owen was born.  One mother in the ward fell asleep whilst breast feeding her baby and woke just in time to catch his leg as he was about to fall on the floor.
Wednesday 19 February
Weight 8 lb 15 oz.  Paul brought Nic and Owen home arriving home at 6.00 after more tests.  The paediatrician is worried about Owen's lack of movement in his arms and legs and is arranging a visit to Guys Hospital London within the next two weeks.
Friday 21 February
Owen is very floppy, but very alert and bright eyed and loves playing pat-a-cake with his arms.  Whatever is wrong with him I am sure he will have the determination to overcome it, although I spent the night worrying how Nic will cope if he is in a wheelchair.
Nic mentioned to her friend Victoria the fact that I always say I don’t like babies, I like them when they are little people, but to see me now you wouldn’t believe it.  I haven’t held a new born baby since Nic was born 27 years ago.
Sunday 23 February
We gave Owen his first bath at home. My brother Martin, Sylvia and their girls came to visit.  Showed Sylvia, who is a radiologist, copy of letter from Haywards
Heath Hospital to Guys Hospital and she looked serious while she read it but said nothing and I was too scared to ask.  Sarah & Catherine (14 and 11) loved Owen and had lots of cuddles.
Wednesday 26 February
Diana came line dancing, looking good considering she had pneumonia and not DVT.
Sunday 1 March
Stayed the night at Nic’s.  Owen is very good at night, once he is fed he goes straight back to sleep and I can usually feed him and be back in bed within half an hour.  It just takes another hour for me to go back to sleep, it’s a long time since I did night feeds.  He wakes twice a night so Nic and I do one feed each, but we wonder how he knows to sleep at night when he spends a lot of time awake during the day.
Tuesday 4 March
My birthday.  Appointment with paediatrician at Haywards Heath, still not heard from Guys
Hospital.  Doctor said he thought the problem was Spinal Muscular Atrophy (SMA), he has come across one case before in New Zealand, and explained the condition and that Owen will not live to adulthood.  Total disbelief by us all, we knew there was a problem but assumed it could be sorted out.  Doctor confirmed nothing to do with Spina Bifida.  He will try to hurry appointment with Guys Hospital who will test for SMA.
We had takeaway at Nic’s but no birthday celebration.
Wednesday 5 March
Nic looked SMA up on internet, 80% of babies do not survive their first birthday.  We discuss that perhaps it would be better for Owen to die than spend the rest of his life without use of his limbs.  Nic is braver than me and has told everyone who has phoned.  I was coward and emailed everyone.
Thursday 6 March
Still cannot believe Owen may only live a few months.  He is so bright, and smiles so much when we play ‘This is the way we comb our hair, play the drum, ride a bike’ etc.  He is 3 weeks old but so much has happened it feels like a lifetime.  Trevor and I took Nic and Owen to Wakehurst Place for a walk and met 2 sets of our friends with their grandchildren.  We didn’t tell them our story.
Thursday 13 March
Owen is 4 weeks old today, but life seems to be in slow motion and it feels more like 4 months.  Nic is now able to drive again and it is good for her to be mobile.
Monday 17 March
Paul & Nic took Owen to Guys
Hospital.  Paul came home while Nic stayed the night.
Tuesday 18 March
The little family all came home by train and by the time they had finished at Guys it was the rush hour.  Owen had blood tests taken which should confirm SMA in 2-3 weeks, they also saw a dietician, who recommended Infatrini milk, a concentrated milk supplied ready made in bottles by prescription, a physiotherapist and a speech therapist.  Owen has been having physio once a week and they are to carry on with these exercises.
Saturday 5 April
Owen staying with us for the first time.  When he was weighed yesterday he had lost weight so has to be fed hourly, impractical as it takes nearly an hour each time.  I fed him every two hours but not going too well and he doesn’t take any more milk than if he had been fed 4 hourly.  He is always anxious to feed and gulps the first few mils down and then just stops.  We dare not burp him until he has finished as otherwise he won’t start again.
Dear Diana
 Thank you for coming today and drawing me although Granny’s not too keen on her portrait, says it looks like that old lady she sometimes sees in the mirror and not the young good looking person she really is.  You should have brought me some sunglasses though as that blouse you were wearing was a bit bright.
 It was nice meeting you – are you as silly as Granny who spends a lot of time practicing line dancing around me on Mummy’s wooden floor, and often makes me feel quite seasick when she holds me at the same time.
 lots of love
Monday 7 April
Nic and Paul took Owen to Haywards Heath to hear results from Guys Hospital, but were told appointment is next week.  They had him weighed, had a cup of tea and returned home.
Thursday 10 April
Nic had phone call yesterday from the doctor asking why she hadn’t turned up for appointment Monday.  (Apparently appointment had been put in the book for the wrong date.)  New appointment made for today and I joined them.  SMA Type I confirmed, as we expected so visit not as traumatic as we thought.  Nic asked how long will Owen live and paediatrician said possibly until 8 months old although it is impossible to tell accurately.  He said a team of doctor and nurses from Crawley
Hospital will now be looking after Owen.
Friday 11 April
Dear Diana
Granny made me a very lovely mobile today using one of my coat hangers and tying on the Christmas decorations and pieces of the shiny paper you gave her.  She has hung it on the lampshade in the hope that when I wake early in the morning I will be so overcome by its beauty it will keep me quiet.  She’ll be lucky, even the expensive ones Mummy bought don’t work, and I am quite happy just looking at the ceiling and lights.
Lots of love
Sunday 20 April
Dear Diana
I have had a very busy day entertaining the Grandparents.  First Granny washed and dressed me, I love that, especially when she rubs baby lotion all over my body to make me smell like a baby.  The only bit I hate is when she puts my vest on over my head, she doesn’t do it like Mummy does and it makes me cry.
Then we played games while she exercised my arms and legs.  I smile lots when my legs are being moved, if I get bored at any time and grizzle she moves my legs to make me happy again. 
Then Granddad sang to me.  When Mummy was a baby he used to sing ‘We are Sailing’ non-stop to her but luckily he sings lots of different songs to me, and I smile politely to keep him happy.
Lots of love
Saturday 26 April - Wednesday 30 April
Nic and Paul took Owen on holiday to Kings Lynn, Norfolk for 4 nights.  Since the SMA was confirmed they have both wanted to have a break away.
Friday 2 May
Dear Diana
 I had my photo taken AGAIN today.  Last week Mummy and I went on our own for some photos of me.  The photographer wanted me to take my clothes off, Mummy didn’t like that idea and said it was very difficult to hold me, but I think she just didn’t want the lady photographer to see my body.
 Today I sat on Granddad’s lap with Mummy, Granny and Uncle David standing behind us.  As I knew the routine I was very good but I did keep my eye on the photographer in case she wanted me in the nude again.  The photo is for Great Grandma and Great Grandpa’s Diamond Wedding present.
 Afterwards we all had lunch together.  Mummy told the others she is planning to go travelling for a month, probably to Australia.  Granny said it was a good idea, and I agree because it is good for her to have something to look forward to.  I know she will miss me so much when I am not here and I will worry if she is too unhappy.
I am glad you read all the Jennifer Trust leaflets and Newsletters, and Granny agrees, wherever did people turn to before ‘Jennifer’.
 lots of love
Saturday 3 May
I bought Owen a silver helium balloon which we tied round his wrist.  He loves watching it move when he moves his arms, and spent almost an hour talking to it.
Dear Diana
 Granny bought me a very beautiful balloon.  It is silver shaped like a star and she has stuck coloured bits and a bell on it and tied it round my wrist.  It moves when I talk to it and I wore myself out last night laughing so much that I gave Granny a treat and let her sleep until 8.00 (even if I did wake her at 2.00 and 5.00).  I am about to have another sleep as I am getting mesmerised by beautiful balloon.
 I am glad you haven’t got the word you cannot spell any more, I get it a lot and you should see Mummy and Granny's face when they find it in my nappy!  That always makes me laugh.
 Lots of love
Wednesday 7 May
Appointment at East
Grinstead Hospital at 9.00.  When Nic arrived told it was 10.00 and to go away.  She was nearly in tears, phoned nurse on her mobile and told to stay put.  The computer system does not allow appointments before 10.00 so she had to be booked in at that time.
Friday 9 May
Dear Diana
 I hope you are enjoying your line dancing tonight. I have been keeping Gran busy so she didn't get bored and wish she was dancing. Granddad bought me a windmill today, but it's not so good as the balloon.
 Going to sleep now
lots of love
Owen x x x
Saturday 10 May
Dear Diana
As Gran woke me at 2.30 and I drank nearly a whole bottle of milk I thought she might like me to wake her at 5.45.  She was not too pleased and put my dummy in my mouth.  I tried again at 6.00 and the dummy was put back in my mouth.  At 6.30 I decided it was definitely time to get up even though I didn't want anything to drink.  Granddad is busy playing with me now and singing lots of silly songs. 
Lots of love
Thursday 15 May
Dear Diana
Mummy said I was a pickle today as I cried a lot and didn't want anything to drink.  Granny said that was not a word she would have used.
I have been playing with my new balloon with a yellow smiley face that Granny bought me.  Granddad and Mummy both said I needed a new one as the silver one was getting a boring now it is 2 weeks old.
love from
Monday 19 May
Owen is still losing weight one week, putting on the next and at 3 months has only put on 1 lb 5 oz.  It is a bit of a battle to feed him, Nic and I are the only ones who do, and although he is keen at first to drink after a while he will just push the teat out with his tongue.  Nic can sometimes persuade him to have more, but I feel his little body just doesn’t want more.  They are talking of giving him a tube, I am worried about this and spending a lot of time reading the stories on the internet of other babies in the same situation.  Most of them do have feeding tubes.
Thursday 22 May
Dear Diana
 My Mummy keeps buying me toys.  Last week it was a tape recorder with nursery rhymes.  She says it is for me to listen to while she showers because my musical mobile has usually finished before she has and she cannot hear me calling out to her.  I think it is because she doesn't know the rhymes like Granny & Granddad do.
 This week she bought me a television that plays Old MacDonald Had A Farm.  I like to watch and listen to that and Granddad especially likes to sing along with it.
 Auntie Someone also bought me a feely snail which silly Mummy thought was a caterpillar.  So we had to change his name from Charlie Caterpillar to Sammy Snail.  I like playing with him as he has a lovely face and his shell unrolls with lots of pictures on it.  But Ollie Octopus is still my favourite with his 8 legs, No 7 rattles and No 3 squeaks.  He has a very smiley yellow face which makes me laugh.
 lots of love
Saturday 24 May
Owen stayed the night.  He cried a lot during the evening and took a long time to settle, possibly because he had his second set of injections yesterday.
Wednesday 28 May
Nurse came to Nic’s to fit feeding tube.  Idea not as bad as I thought, after feeding with the bottle we can top up as much as we want, but Owen was not a happy bunny, Nic spent most of the afternoon driving him around trying to quieten him.  Nurse came back 7.30 pm but he had finally fallen asleep.
Thursday 29 May
Nurse came 8.30 am and took tube out as it was causing Owen a lot of distress.  He was a completely different baby straight away and spent the rest of the day very calm as if he had been traumatised.
Friday 30 May
Given suction machine and instructions for use.
Saturday 31 May
Owen at our house again but he is not as settled here as at home, especially as Nic always lets him sleep on her before putting him down and then he often wakes up.  He did the same to me so he spent the whole evening in my arms, 3 times I tried to put him down when he was fast asleep and each time he woke and cried.  I couldn’t cook dinner so Trevor made sandwiches.
Sunday 1 June
Dear Diana
 I decided last night to treat Granny's house like my own so insisted I spent all evening in her arms, it's easy to do that, I just cry whenever I am put down even though they think I am fast asleep.  Granny couldn't cook dinner (they should have milk like me) so Granddad made sandwiches. 
 Then I woke at 1.00 but refused milk, I wanted sandwiches, then again at 5.00 and after listening to the birds singing I eventually drank some milk at 6.00.  Then we watched children's TV, that was funny.  Granny was feeling tired and I felt sorry for her so I went back to sleep at 7.00 and woke at 9.00.  She was very pleased with me and says she still loves me.
 I am now keeping Granddad amused.  We have a new game, I stick my tongue out and he copies me, although Granddad thinks he taught me this trick.
I am glad it is not so hot today, it was a bit too hot for me yesterday, and Granny has gone a funny shade of bright pink from sleeping in the garden after the beer with her sandwiches for lunch.
 I hope all goes well in Guildford, I will try to keep my fingers crossed, or maybe my fist tightly closed and hope everything is ok like when Gran had to go back for a second opinion on her mammogram.
 lots of love
Sunday 1 June

Owen was christened.  A small, emotional, ceremony with just 7 of us, Nic, Paul, Paul’s parents, us and Dave.  Owen was very good and didn’t make a sound when the water was poured over his head.  Afterwards we went out for a meal.
Tuesday 3 June
Nurses fitted silk tube which is thinner and more flexible than the other one.  It is inserted with a wire inside, which is then taken out, or put in the freezer for 20 minutes beforehand.  He was not too keen at first but quietened down later.
Thursday 5 June
Had trouble feeding during the night.  Owen refused the bottle so we tried feeding through the tube but it was blocked.  We spent a long time trying to solve this problem, without luck, and in the meantime Owen had fallen asleep.  He woke at 7.00 without a night feed and still refused bottle.  We phoned the nurse who said to put warm boiled water through tube and magic, it worked.
Friday 6 June
Trevor and I went to Stratford to celebrate my parent’s 60th Wedding Anniversary.
In the afternoon we visited the offices of the Jennifer Trust.  It was nice talking to these people I have been emailing since the diagnosis was confirmed.  Met Jennifer’s Mum who started the trust after Jennifer died 18 years ago.  I told them their website is the best for information on SMA and I spend a lot of time reading it.
Spent the evening talking to our relatives and obviously quite a lot about Owen.  Sylvia mentioned that when she first saw Owen in February she thought he was going to be severely disabled for the rest of his life.
Saturday 7 June
Nic Paul & Owen joined us for the Celebration.  Whilst giving Owen his last feed he was sick all over Nic and the bed.  This is the first time he has ever been sick.
Tuesday 10 June
Nurse called in and suggested a pump to feed 500 mls during the night.  This is an unrealistic amount but would mean an uninterrupted nights sleep, so we said we would give it a try.
Wednesday 11 June
Owen now seems very content and is talking again.  He has a lot of secretions which have to be suctioned regularly, and also does not take the bottle at all, so we don’t offer it to him now.  I assume this is because he always has a full stomach and not hungry any more. 
He is having about 480 ml a day over 5 feeds whereas before he rarely had more than 400 ml with 6 feeds.  He has dropped the 2.00 night feed which he generally woke for, just waking at 5.00.  But feeding through the tube takes a lot longer, although during the night feed he is mostly asleep, and seems very impersonal as there is no cuddling involved.
He is getting quite difficult to carry around, he is growing longer but not fatter, and his head is very heavy.
Friday 13 June
Owen is now 4 months old, and although the first 4 weeks seemed like 4 months, these last 4 months now seem to have flown by far too quickly.
Saturday 14 June
Dear Diana
 I have been having a good time with the grandparents this afternoon.  They let me watch TV while my tum was filled up with milk, then I decided to join them while they were eating dinner so I laid in the middle of their table on my pillow.  I have been playing with my balloon, it really makes me laugh, Granny says she will get you one.
 I am now going to see very lovely mobile and get undressed.
 Gran says you have gone to the dogs so I hope you are enjoying yourself.
 lots of love
Owen x x x
Sunday 15 June
When Owen stayed last night there was no repeat of two weeks ago when I spent all evening cuddling him.  In fact he spends most of the time on the pillow on his side to let all his saliva out which sometimes is very bad and I had to use the suction machine several times.  His feeding times are more regular now as he doesn’t cry so much – 5.00 am, 9.00, 1.00, 5.00 and finally 9.00 pm and although impersonal Trevor can keep an eye on him while I do other things.
Monday 16 June
Owen now seems very content and is talking again, this evening for almost 2 hours non-stop, which makes him all the more loveable.  Nic was saying ‘why’, why is this happening to me?  The Jennifer Trust pamphlets say this is what everyone says, I don’t, I have been saying right from the start ‘it’s not fair’.  It’s not fair that Nic is such a good mother and will soon have no baby.
Monday 23 June
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Tuesday 24 June
Tube feeding going ok and hasn’t stopped Nic going out as it is easy to feed at other houses although she has not tried whilst out in public places.
 Sunday 29 June
Dear Diana
 I have been so busy entertaining Gran & Granddad, letting them feed me, suction me and clean up my sick that I have fallen asleep after my breakfast milk.
 Gran took your Christmas decorations off very lovely mobile and decorated my milk stand and also used some more of your pretty purple paper.  Although I think it was your disco ball that mesmerised me into sleep.
 Have a nice day, I am going to a birthday party this afternoon.
 Love from
Dear Diana
 I am having such a good time here at Gran’s I am staying another night.  She says it's a good excuse for her not to go to work tomorrow.  Mummy has a bad migraine and has been in bed all day so I am keeping out of her way, we don't both want to be sick at the same time.
 I am glad you like Mr Happy balloon, mine usually last 3 weeks, the one Gran bought on 8 June now just floats on the floor so it is about time she bought me another.
 I had better go now as it is time for my last feed and I will try and be a good boy for Gran tonight.
 Night Night
Love from
Monday 30 June
Owen had stayed at our house as usual on Saturday, but Nic had migraine on Sunday so he stayed an extra night.  Last Thursday he was given medicine to stop all his secretions (which takes a couple of weeks to help) and powder to stop him being sick.  This was the first medication he has ever had.  However I was worried as he had been sicker than usual and not had a dirty nappy.
Dear Diana
 I am here at Grumpy Grans again.  You would think she'd be pleased to have time off work but keeps muttering about wanting to sleep for a week.  I know she worries about me when I am asleep so I woke her every hour to check she was ok, but I slept all through my nightime feed until the end when she did lots and lots of sneezes which woke me.   She says she has hayfever and not a cold so I will be ok. 
 Mummy is feeling a little better so hopefully she will collect me soon,  I was very sick after my breakfast feed, it is all this snot I have, its a bit of a competition with Gran as to who has the most but at least she can get rid of hers on her own.
 Lots of love
Owen xxx
This morning he was very sick after his breakfast feed (but I did have a dirty nappy) so when Nic collected him we took him back to her house lying in his Moses basket as we felt he would choke in his car seat.  Nurse Chris came and saw him, thought he might have something on his lungs so we went off to
Crawley Hospital by ambulance.  The ambulance crew said he was the youngest person they have had on a stretcher as babies are usually carried - but he cannot be carried easily these days due to choking and his floppyness. 
In hospital they monitored him, gave him antibiotics and a chest x-ray which was ok and he rallied round quite quickly.  In fact when he had blood taken out of the back of his hand instead of crying as he has done in the past he had quite a long chat with the doctor.  Nic stayed the night with him and they are due home again tomorrow.
Dear Diana
 I had a really exciting day today.
 After I arrived home with Mummy and Gran my nurse Chris came to see me.  Mummy and Gran had been worried about all my snot and sickness and Nurse Chris thought I might have a problem with my lungs so she called 999 and off we went.  Lights flashing, siren sirening everyone got out of our way - you should have seen us.
 At Crawley Hospital a doctor and nurse were waiting for us outside, a special lift was kept free and off we all went to Jumbo Ward.  I had a monitor put on my big toe and blood taken from my hand.  I am quite used to all this by now and had a good chat with the doctor while he was doing this and now I have a big bandage on my hand to show how special my blood is.  Then they gave me a chest X-ray which they said was ok and fed me lots of clear stuff which is in my milk, and antibiotics, into the bandage in my hand.  I am not sure what all the fuss was about but it was jolly good fun.
 Anyway Mummy is staying with me tonight and at the time of dictating this I am trying milk again.  Nan and Grandpa are here and Daddy is calling back again when he has finished work.  The doctor who is coming see me Wednesday says I can go home tomorrow if I am a good boy.  But Eileen the nurse is very funny and has given Mummy tips on how to tube feed me she didn't know and has given me lots of new toys to play with so I might want to stay here a little longer because I have to come back on Wednesday to see Sandra for my physio and the OT (occupational therapist).
 lots of love
pp Owen
Tuesday 1 July

Paul brought Nic & Owen home after lunch and I stayed the night.
Wednesday 2 July
We had a disturbed night by Owen’s noisy breathing and we had to suction him several times.  I did the night feed with him lying on the bed.  He woke at 6.30 his usual bright eyed self so we brought him into bed with us.  He smiled and chatted as normal and I suddenly woke at 8.45 and found Nic and him both asleep holding hands.  The doorbell went and it was the doctor making her routine visit.  Owen woke and chatted to her she said he was fine, and would visit again the same time in 2 weeks. 
Nic and I fed him, again on the bed to make it easier to wash and change him later.  He played with Ollie Octopus and was asleep by the time the feed finished an hour later.  We couldn’t be bothered to wash and dress, so Nic laid on the bed and I sat beside her and sent an email to Diana who was due to have an operation for breast cancer later today.  As I pushed the send button at 10.37 Owen made a little noise, and passed away.  He had been with us 19 weeks, 6 days.
The moment we had been dreading had come and I was pleased to have been there.  He looked so peaceful and we were glad he will not have to suffer any more, as he had been getting weaker especially with all his secretions.
We kept Owen with us until 2.00 when he was taken away in a little crib which Paul carried to the car.
We all left at 3.30 leaving Nic & Paul alone.
Dear Diana
Gran is all tied up in a muddle on the floor muttering words like cross, crossed, Diana etc.  I think she is tied up because all her fingers, toes, legs and arms are crossed for you later, she isn't really cross with me as I am asleep at the moment.  I have lots of medicines to take now and it takes Gran and Mummy ages to feed me so I got bored and went to sleep.
It was funny this morning.  I woke at 6.30 and Mummy and Gran took me in bed with them.  Then after a little chat we all fell asleep until 8.45 when Doctor Catherine woke us when she came to visit.  So she came upstairs and saw us all in bed together.
no I am not practicing my sums, Gran says its her positive thinking for you today.
Lots of love
Thursday 3 July
Paul’s parents, Trevor and I returned to make the funeral arrangements.  Nic asked for no flowers, but donations to the Jennifer Trust.
Friday 4 July
Diana phoned to operation went well and all the cancer removed, so although she has to have radiotherapy there will be no more surgery or chemotherapy.
Monday 7 July
The second day I had been dreading for 4 months was better than I expected.  St Swithun’s church was full of Nic and Paul’s friends and family, a lot of young people and also the medical team who had cared for Owen..  Nic read the poem A Child Loaned and Paul’s Dad read Remember Me.  After the ceremony 7 of us left to go to Mount Noddy for the burial, taking balloons to let off for him.
Finally about 60 of us all met up again in a private room in the local pub where Nic and Paul had also arranged a buffet.