On the 21st march 2002 Danielle was born weighing in at 6lb 10 oz. I was induced on the 39 week as there was lack of ammonic fluid. The birth went well apart from it lasted 13 hours, I bottle fed Danielle and the next day took her home to meet the rest of the family her big sister Shannon and her big brother Keenan.

Everything was great, she slept well after 3 weeks, she was going through the night, I had to wake her for most of them. She was such a 'good baby' I couldn't believe my luck. But then on the 22nd September 2002 she was nearly 6 months old, we had all gone out to Knock Hatch Adventure park for the day. It was a lovely day Dani was in her buggy asleep and the rest of the children were playing. I was with my Mum and Dad and we decided to go for a coffee, we were all sitting down when Dani done some really odd moves a bit like a startle reflex which is what I thought it was. My Mum reassured me that some babies at that age do have those startle reflexes.

The thing is during the day she had up to eight, then I thought 'no this can't be normal' so I took the children to the car and ask if I could be dropped of at our hospital just to check. So I said to my other children that I was just going to get Dani checked out then I would be home. Well as I arrived they took her name etc then you get told to sit down till your name is called. When Dani's name was called I spoke to a nurse  I told her what had happened in the day she told me that it was very normal of babies of Dani's age to get them. I asked if I could still just check her out, she sent me back to wait and said 'just to let you know it will be a long night'. Dani then started to do these weird jerks again but this time she didn't seem to come out of them. Really anxious and worried I stood up and ran past everybody and went into the emergency room and shouted help!

They took one look at her and rushed her in, someone came over to me and said that Dani was having fits. I was like 'ok you mean she has epilepsy is she going to be ok'. They said that she would have to stay in, I was taken too the children's ward where the paediatrician said that Dani might have a condition but wasn't sure so she was transferring Dani to Guys hospital. That's when I broke down in tears because what I thought was Dani having startle reflexes, now she was going to Guys which is for children who are really unwell. I phoned my now ex husband who rushed over with the kids with some stuff for Dani as we were going to be taken there by ambulance. My friend Carole came with me as my children needed there dad because there Mum and Dani were being taken to London and we didn't know what and how long we were to be there. With everyone crying and Waving goodbye we were taken on our way, in the ambulance Dani was having more and more of these fits, it was really scary.

Once in guys she had nearly every test under the sun which in itself was scary as she was my baby. Having scans and blood tests, around 5 days later the consultant took me to a room where four other people were present. I started to feel so scared and tears welled in my eyes. He begun to tell me that Dani had a condition called TUBEROUS SCLEROSIS which in itself was a mouth full all I could say was 'what's that' and 'what's going to happen to her'. Well all he gave me was the basics which was that this was a 'incurable condition'. 'that the fits she was having were called infantile spasms', she had 3 tumours on her heart which may regress. 5 on the brain which they would keep an eye on and ash leaf markings all over her skin.

It was hard enough to take in the word but to say that there were tumours etc, I burst into tears. they then said they would let me take that in and that we would talk some more in the morning.

That night I couldn't stop holding and staring at Dani, They told me to go and get some sleep but I couldn't do that all I kept thinking was 'why my baby' ' what's going to happen to her and our family'. When Dani was sleeping I rang My now ex Husband and tried to explain what Dani had. He was shocked and said he would come up in the morning so they could explain to us in more detail. I phoned my Mum who still in shock that all this was happening because she thought it was just reflexes. My friends Carole and Paul just to update them as they had been with me in the ambulance. I asked them to find out some information on this word they had giving me on the internet.

We spent another 6 days in Guys, I never left Dani's side I was bombarded with doctors and home help etc, Dani was tested for everything going, When she had her MMR I had to gas her to put her to sleep for the test. I remember thinking how was I going to cope it was all a blur.

Dani was put on Vigabatrin for her fits, and I was sent home. Dani has never had full seizure control, she had four weeks of no fits and I really did think we had crack it but unfortunately not.

November 2004

Dani's father and I have separated due too personal reasons that I cannot go into but he couldn't really cope with the pressure that comes with bringing up Danielle. He has chosen not to see his other two children. He moved into his own flat and the three children and I are moving after Christmas.

We had a lovely Christmas and Dani was a lot more  interested in the tree and opening the parcels. she isn't really into toys as she doesn't really play but let's hope next year she can enjoy them. Shannon and Keenan loved Christmas and we are all looking forward to a new life and new year.

January 2005

Busy month we moved to a four bedroom house on the 14th of this month very hectic but the fourth bedroom was well needed as Danielle fits a lot in the night and was waking the other two children. The only problem I had was transferring Danielle from her buggy to sleeping on a mattress. Dani has been sleeping in her buggy ever since she had been diagnosed back when she was 5 months as in Guys she had slept sleeping upwards. After coming home from hospital Dani slept a lot better by sleeping in her lay down buggy.

I managed to transfer Dani into sleeping on a mattress that was tilted with wedges  and after some sleepless nights she now can do it so I am very proud. Of course Shannon and Keenan love their rooms as they have there own space.

Dani has loads of appointments this year as usual there is never a day without something medical.

She had her yearly check in which she has said to be a 2 year old in physical development and 18 months in her speech and language.

she will be going to special school and her fits are still uncontrolled. Dani is on Keppra 500mg once a day, epilim 13 and a half mls twice a day. she has been transferred to Elaine Hughes at guys as her consultant has run out of meds to help control her fits. They have spoke to me about the nerve stimulator and brain surgery to remove the tumours. My appointment is in October so I will let you know how that goes.

Dani fits anywhere from 15 to 40 a day. so it would be lovely to see them more controlled.

Some of Dani's words are , Mummy (whom she calls anyone), byeeee (bye), Hello, purple (she does seem to know this colour as she does point to anything purple), broom broom (car), yum yum (anything you can eat), bot bot (bottle or drink), thn hum (thankyou). hmmm (please), she also knows some Makaton which I s simple sign language which she uses together with some of these sounds.

February 05

Dani has started a main stream nursery, called the lighthouse, she is going there three times a week mornings for 2 and a half hours. she has been for a vist  and they think she would do better in the toddler room as although her abilities should be in the baby room they feel Dani is too big size wise to be able to go in that room. They are going to see how she goes in the toddler room. she is doing well she has one to one because of her seizures and her speech and understanding.

I know she is enjoying school because will only have to drive past and she shouts "Sool" loads of times over and over again and runs into school kissing everybody when she arrives.

October 05

Sorry about the long wait for this update have been really busy. Dani is not doing to bad she has been to Guys and they have put her on the waiting list to have a telepathy test done, this is where they keep her in a room wired up so they can monitor her fits and see what is going on, this can be a stay from 2 days to a week as long as she has all the fits which are needed for the assessment. They are looking into whether Dani can have surgery or the VNS.

I booked a short break in the haven caravan site for my sons birthday which was 19th and I went on my own with my three, call me courage's but they all deserved a break. I didn't know how dani would be as we have never been away from home unless staying in hospitals or she was very young to remember.

I took the car and drove 4hours to Devon stopping once on the way there. The only difficulties I had was the sleeping arrangements as Dani slept with me in a double bed and unfortunately Dani had lots of seizures in the night that were quite scary at times. She found the change quite hard and the night time difficult has we were in the club house in the evenings and Dani didn't understand the not touching the stage rule or staying in the club. I found that really I should of taken another adult because even the simplest of things like going to bar for a drink or taking other children to the toilet very hard .

Anyway they all seem to have a great time and now I need a break lol.

November 05

Dani has started being really aggressive towards herself and others by biting and hitting out. The nursery called a meeting to discuss this has she bit the one to one helper and they found her hard to release and the girl was left with a really bad bruise. I hate this has I know this isn't my daughter and I find her behaviour really difficult as she has the strength of a bear and the size of a six year old. she is refusing to do anything that includes getting dressed and going in the car seat, which is my worse nightmare at the min because she only just fits in the seat if she struggles and hits out it takes me up to an hour at worse to get her in and I am left with hair pulled out and bite marks.

She is screaming and shouting most of the day. I have rung the consultant who is checking up on the situation every few days but has suggested lowering the dosage of her meds. which I think is a good idea. at the moment I will take any ideas.

December 05

Unfortunatley Dani is still being aggressive and I am finding her very difficult been feeling quite house bound due to her behaviour, its getting me down along with her brothers and sisters, I rang her doctor again and he really thinks now that we should just not give her any  keppra and just stay on the epilim. so I am giving that ago I just hope it works. I have read a lot of websites saying that they went through the same when their child was on Keppra. so im glad Dani is off that med. I just hope it works but I am aware of the lack of seizure control so I'm sure they will increase.

Dani behaviour started to improve a couple of days before xmas, which was really good. she enjoyed xmas for the first time as she could open the presents.

I wish everyone a happy xmas!!!! and New Year

January 06

Hope everyone enjoyed xmas and had a great new year. I'm just in the process to having Dani's statement done for her school, as she needs to go to special school and to get into one of them she needs to be statemented. Long process as they contact anyone that's been in contact with Danielle so lots of forms, great!

So I will just have to wait and see how it goes it takes up to 8 weeks. Dani is doing really well at the nursery she goes too, she has one to one and sometimes finding some activitys hard to join in, epsecially circle time. Loves water and sand play and can spend a lot longer in those activity's. I'm just glad she can spend a couple of hours without me running behind her all the time.

March 06

HAPPY BIRTHDAY DANIELLE

Danielle 4th birthday!!!

I'm so happy she has made it to 4 and with not many trips to hospital. I am taking her to macdonalds and to there play area with some friends. She loves balloons and they put loads around the areas where Danielle was eating.

People who came:

Shannon and Keenan

Jaymie and Kieran

Leah and Connor

Chris (my boyfriend)

Carole and Paul

Francis and Nicky

It was a really good afternoon Danielle enjoyed her self and this year I really think she knew it was her birthday, She even opened her presents. loved blowing out her candles on her cake and really was tired so when straight to bed when she got in she never even had the energy to open up her presents from the party.

April 06

This month I have a doctors appointment to review Dani fits, I still haven't heard from Kings hospital and am really worried as they still don't know what direction to take in regards to her fits. So my doctor has decieded to add a new addition to epilim which has now risen to 17 and half mls at night only. He thinks tomapax will be good for her until Kings review her. He is starting her on 25mg a night going up to 50mg morning and night. I just hope it works.

She has her statement and is going to the south downs special school in September which is great. Somehow I now feel that it has hit me that I have a special needs child I know that sounds funny but I some times think the doctors have it all wrong and Danielle will get better, but I know that just not true and I think we all as a family realised that. I just want to do the best for her and the rest of my family.

May 06

That medicine has brought a monster into Dani, she has not stopped screaming really high pitched and thrashing about, I feel really useless as I don't know how to help her. I don't know if she has a headache or where the pain is, she doesn't know what to do with herself. she only took the med for 4 days and I know I cannot keep her on it she is getting no better and although her fits have gone which is great her quality of life isn't and I just don't know what the doctors are going do.

June 06

Now the hot weather now arrived Dani's fits have started to increase, The doctors really don't know what other medicines to try on Dani, as they give her really bad side effects so at the moment she just on epilim. I have some appointments coming up this year for Dani to have a telementry where she is video and set up to an EEG unit where they will then determine which part of the brain could be operated on

Aug 06

Dani's last day at nursery as she is starting her new school in September. I'm really worried for her as i don't know how she will cope with the change as she will be picked up by taxi as I live 2 miles away. So I can also take my other two children to school on time. I'm looking forward to having some time to sort things out like the house and some me time lol. got my appointment through for kings the telementry. seeing her consultant this month too. Dani's fits have increased to 7 a day lasting 3 to 6 mins.I have BUCCAL which I can give Dani when her fits go past 4 mins.

Sept 06

I'm having to take Dani to school for a while as the school hasn't found anyone to take Dani needs on yet. Great start! She loved getting into her uniform like her brothers and sisters do. Having her book bag to carry with her little lunch box, its amazing how they look all grown up when there in school uniform. I will add a picture of Dani on her first day. She attends a special needs school there are 9 children and 5 members of staff. I took her there and she went in happily she went straight into the home corner. I didnt know what to do with myself that day i was waiting for a phone call. I did get one asking me to come in as Dani had loads of fits and they wanted me to sign some forms on what to do in a emergency.

Her first day didnt go to bad but i had been chasing her transport up. they found a temporary service. they gave the taxi a protocal in case Dani had a fit in the taxi to and from school. The next day her taxi arrived Dani screamed as she really didn't want to go in there with out me. I felt really useless and in some way it was nice to know dani had some prefrence on people. I watch her go crying as she left heart wrenching I phoned the school they told me she arrived and that she was happy. That didnt stop me from worrying. Don't think I will ever stop as Dani communication and speech isn't good, its not like she can tell me about her day or what she didn't like that day etc. That's one of the hardest things I find with this condition. The school has a home to school book where they can write how many fits dani has and what she had done that day.

Dani really tired and ratty when she comes home from school. she wants to just go to bed when she gets in. Its really hard getting her to go past 4 o'clock. bless her!!!

Oct 06

Dani had a EEG done at haywards heath. Everything came back as she has fits lol. nothing I didn't know really, but she was really good when they put wires on her head. took about an hour all together. she still has to attend the one in kings this year. They also want to do her another MRI as on her last one she has 9 and a half tumours and one had increased in size so they want to check on that. she also being booked for a PET scan. scans on kidneys and a eye check this year. bless her there are so many appointments to keep. I have already put some on the calendar for next year already. I think we spend more time down the hospital. I will let you know the results to these when I have them.

NOV 06

Dani has been told she will be a star in her nativity, cant wait to watch it they say she been really good in practice. My eldest daughter Shannon is appearing in a concert she was chosen from her whole school, so I am very proud of her. My son is also doing well he is going to be the narrator for his school play. so its a very busy time but that's usual for xmas.

I feel Dani is really getting some idea about xmas, when i put the tree up she was so excited every morning she comes down and say 'tree tree'.

Her speech is coming along she is saying a few more words and even said three together so that's really good news.

got a second offer of a MRI so she is semi booked in for it on the 11 of dec. so I shall let you know if she will be able to go.