Grace & Lissencephaly


A Miracle, So Beautiful.

This is Grace, she was born on the 2nd April 2008. At the time we were unaware how our lives were about to change forever. My beautiful baby looks so perfect. On the day we left hospital we were told that we would have to return for a check up the following week for an ultrasound scan as Grace's head circumferance was measuring small. That was not a problem, so the following tuesday we returned to the hospital, we sat in the waiting room until eventually it was Grace's turn to go in. We went into this room where the doctor and nurse were telling us about the procedure they were about to do and were explaininig to us what they were looking for. They told us they were looking for dialation around her brain that was picked up on the ultrasound scan that I had the day they induced me. My husband and I were unaware of this dialation so we were then told that we would need to contact Grace's doctor at the hospital, again we were unaware that Grace was under a consultant at the hospital. As the appointment went on it was obvious that what we thought was a routine check up was a lot more complex than we could have ever imagined.

When we left the hospital we were told to contact them a few days later to speak with a doctor who we were told was Grace's consultant. So three days later I made the call to his secretary, she was unable to help me but told me that she would look into it for me and contact me back.

An hour later the consultant phoned me and told me that they were concerned for Grace and that the ultrasound scan that she had was inconclusive so she would need to return back to the hospital the following week to have a CT Scan.

Again a week later we returned to the hospital this time to the childrens ward where the doctors took a lot of blood samples before she was sedated ready for the scan. A few hours later after Grace had come round and had been fed we were again allowed to return home.

The following day the consultant rang me on my mobile and asked if he could see us that friday after his clinic. By now i knew that it was serious but i still was praying whatever it was, it wasn't that bad. After all she looks so perfect, she had passed her hearing test and she was at home with us if it was serious they would have kept her in at the hospital.

When we returned to see the consultant, he was very nice. He took the time to sit us down and explained to us that Grace has what was commonly known among doctors as Lissencephaly (Smooth Brain Syndrome). He never went into great detail, he didn't want to bombard us with information, but he told us that he had made us an appointment with a neurologist and that he would explain to us in more detail.

As the weeks passed by awaiting this appointment I never felt the urge to look up what we had been told. I was still holding on to my hope, that this was just a mistake she looks fine, she doesn't feed well but not all babies do. Two days before our appointment I changed my mind, I needed to prepare myself so I wouldn't break down at the hospital. From that moment on my world came crashing down. The information I read informed me that Grace was severely mentally and physically retarded. She will never develop past three to six months only her body will continue to grow. As her body continues to grow she will loose the ability to move her arms and legs and that she will start to have seizures. Her lifespan is unknown, she may only be with us for a short period of time.  http://www.ninds.nih.gov/disorders/lissencephaly/lissencephaly.htm

When we visited the hospital the neurologist basically just confirmed everything that we had read, we have been offered genetics testing but other than that we were told Grace will need a MRI scan at approximately 12 months old, but all we can do is love and care for her. They think that Grace must have caught an infection during pregnancy and results from her blood tests should confirm this. The neurologist doesn't wish to meet with Grace again.

We had Annabel (Grace's sister) christened at six months old. Our plan was always to have Grace christened about the same age, but due to circumstances after our visit with the neurologist we decided to have Grace christened straight away and she was christened at nine weeks old. Grace's god parents got the Grace the best present that anyone could ever of imagined, they had Grace a star named after her so that no matter what happens we will always have Grace's star.

Grace's progress

 

Three Months Old 

When Grace reached three months she started to coo and she smiles, but they are few and far between, no real acknowlegement. She doesn't feed particularly well but she is gaining weight. Grace tends to focus more on light than people and objects around her. She arches her back alot and throws herself back when she is distressed.

Social services have got involved with us for continued support and we have been referred to the local pediatrician . I have also been in contact with people who's children have got/had lissencephaly.

Four Months Old

At four and a half months old we have recently been back to the hospital to Grace's consultant, we were given the results from all of the blood and urine tests that they carried out. All of the results are clear, they can not find any abnormalities. They also carried out TORCH screening which checks her for any infections that she may have caught during pregnancy, again these results came back clear, along with the chromosome checks. The next step is to see a geneticist, again Grace has been refered an we await an appointment.

At four months Grace smiles more in response to being spoken to and can fix on an item for a short period of time. Her feeding is poor, she lacks head control and continues to throw herself back when in distress.

We have met with the local Paediatric Doctor,  Grace will now also be under her, she will refer us to the local services that Grace will require. Therefore from our appointment with her we now await further appointments with a Speech Therapist, Occupational therapist, Dietician, Physiotherapist, Councilling services from Tamworth Special Needs, The feeding clinic and any other specialists which Grace may require. The local doctor is going to also ask Graces consultant if Grace can have a pneumonia injection, hopefully this may help Grace's immunity.

Five Months Old

Grace at five and a half months old started having infantile spasms,  due to these seizures Graces feeding also got worse, as the seizures were tiring her out. To control the seizures Grace spent one night in hospital following her first Steroid injection , then she had to attend the hospital every other day for two weeks for further steroid injections. After the two weeks we were given an oral form of steroids for Grace to be given to wean her off the steroids. During these weeks we also had to attend hospital for two further appointments as Grace had to have two EEG's done. The results from these tests show that the seizure activity in Grace's brain has been controlled by the steroids. Unfortunately Grace will more than likely develop further seizures of a different nature, nobody knows when we just have to keep an eye on her. The Steroids did help Grace's feeding, they made her very hungry, so she has gained weight and continues to gain at a steady rate.

Six Months Old

Grace only a few days sfter finishing her steroids and after the all clear from the EEG, stopped feeding. Grace and I spent five days in hospital, she had a NG Tube fitted to ensure she is getting food into her body. She wasn't poorly, she was still all smiles and happy but just decided she didn't want to swallow for us. During our stay at the hospital I was shown how to feed Grace through the tube so that we were able to come home. Grace takes a small amount orally and the rest of her feed is given to her via the NG Tube. At least she is getting food in her system. Grace has also had a pneumonia injection within the local community as she will have a weak immune system and will be prone to such infections.  The local childrens physio team are now involved with Grace to help with the stiffening of the joints. She has so many nice people involved to help her along this journey.

Eight Months Old

Grace is still fed Via the NG Tube, and is currently still on a milk only diet. Grace's weight has now stabilised since her course of steroids and she is now average for her age. She is very alert, loves being spoken to and she does respond well. Physically she is still like a baby with her movements, she has a good kicking action of her legs and she has limited arm movements, although since she has started physio we have noticed that her right arm does now come up as far as her face in a swooping action, the left arm is very stiff and there is less activity. We have just celebrated Graces first Christmas, it was lovely. Grace has had lots of sensory lights and toys to help her development.

Ten Months Old

We have been using some of the money out of Grace's fund to buy her some essential items, we have had Grace fitted for a highchair (Bee Highchair from Jenx Limited), she has been fitted for a pushchair (Thomashilfen Jazz EasyS from Tendercare Limited). We have also purchased some Tumbleforms for Grace, a floorsitter and a tadpole system. Also we have had contact with Brainwave in Somerset and we have secures a date for an initial assessment for Grace. Grace is still fed via the NG Tube, althougth she does now have tastes of food on her lips (she won't tolerate a spoon). She has now had her forula milk changed aswell to a high calorie milk (infatrini). Grace's seizures have returned again and therefore Grace is back on the course of steroids, two weeks of injections (every other day) and then soluble steroids to wean her off. I wish I could take away all of the bad things, it hurts so much having to watch my baby go through this, I love her so much.

One Year

Grace has reached a very important milestone, her first birthday! We celebrated by having a birthday party and inviting lots of her friends. We had kimbles and a clown and of course cake and party games. Grace has been to Brainwave in Somerset for her first initial assessment. She was a very good girl and we have now got a set of exercises to do with Grace 5 times a week, the good thing was that they showed us and explained to us the importance of each exercise and how it will benefit Grace. Grace has also had her first trip to the seaside, as her Grandad and three friends did a sponsored cycle ride from Wilnecote to Skegness. Grace is currently very well, she is still fed via the NG tube but has now  been refered by the local paediatric doctor to have a gastrostomy. Also recently Grace met with a gentleman from the Gentlemens Night Out Charity who gave Grace £1500 towards items for a sensory room that we are setting up for her. We are still awaiting delivery of the main items but this should give Grace some excellent stimulation once it is up and running.

 

 I have now created Grace a caringbrige site which you can view at the following link: www.caringbridge.org/visit/gracehorton at this site you can leave messages and sign up for journal updates about Grace. We love to hear off people and read your messages.

 

We have been told by social services that there are going to be many specialist items that Grace will require as she develops and adjustments that may be required to the house, to enable Grace to have  a better quality of life.  Unfortunately because Grace's condition is so rare, there is no designated charity to offer us continued support and advice. Along the way we will be faced with many battles fighting for specialist equipment that she will require tailoring to her needs etc. Luckily we have a good, strong and supportive family who are always there and between us all we have set up a Treasury account for Grace so that we can proceed with doing our own fundraising events. This will enable us to fundraise and the money will be used to pay for Graces needs as and when we are faced with them, such as a specialist car seat/highchair which can cost anything upto £3000 an item. 

 

We now have a Treasury Account for Grace so fundraising events that we have planned continue to go ahead, the events include a darts event supported by PDP Mark Hylton on Fri 22nd Aug 2015 @ The Globe at Wilnecote, A Ladies night Fri 26th September 2015 @ Wilnecote Working Mens Club. We have many more ideas for in the near future, such as a sponsored canal walk, a sponsored male waxing (if we can get enough brave men to participate)! and many more.

We are always very grateful of any donations for raffles etc,  if you would like to donate to Grace's fund, or send prizes you can do so by forwarding them to he following:

All cheques should be made payable to: Grace & Lissencephaly, please private message me for postal details alternatively you can donate through paypal using clairehorton06@hotmail.co.uk.

Alterntively if you would like to find out more information about events /fundraising activities that we have planned you can contact me at the following email: clairehorton06@hotmail.co.uk

At one of the fundraising events that took place, on the table was a prayer for Grace, i would like to share this with you and I hope it touches your heart like it touched mine.....

Heavens Very Special Child

 

A talk was held quite far from earth

"It's time again for another birth,"

Said the Angels to the Lord above

"This Special Child will need much love"

 

Her progress may seem very slow

Accomplishment she may not show,

And She'll require extra care

From the folks she meets down there.

 

She may not run, nor laugh, nor play,

Her thoughts may seem quite far away,

In many ways she won't adapt,

And she will be known as handicapped.

 

So let's be careful where she's sent

We want her life to be content

Please Lord find parents who

Will do this special job for you.

 

They will not realise right away

This leading role they're asked to play

But with this child sent from above

Comes stronger faith and richer love.

 

And soon they'll know the privilege given

In caring for this gift from Heaven

Their precious charge so meek and mild

Is Heaven's very special child.

)

We would like to take this opportunity to thank everyone who has donated towards raffle prizes and people who will be participating in any of the events that have been organised. Your support is very much appreciated.

Thank You x x

If you would like to donate to Grace & Lissencephaly to help towards specialist medical equipment/therapies etc then you can do so using PayPal. The PayPal email you will need to use is: clairehorton06@hotmail.co.uk please quote Grace.

You can view more photo's of Grace on the following link: http://clairehorton06.googlepages.com/photos

You can also view more about Grace at the following link: www.lissencephaly-grace-horton.co.uk

You can view other childrens cases at the lissencephaly contact group. www.lissencephaly.org.uk/