Appointment!

Yesterday we had our appointment at Nottingham clinic and I am glad to say that it has reassured me about nearly every thing that I felt nervous about! We were seen by a lovely patient woman called Mary who made me feel at ease from the moment that we sat down and started talking.

First things first we had to sign lots of consent forms which she had to go through with us one by one. Then she got out a box with some medication and needles in and she said that she was going to go through how to administer the drugs that I will be taking in January. So we had a go at mixing the drugs and handling the syringe (which sounds really dodgy haha!) Then she gave me an empty syringe with a smaller needle fixed on the end which she said would be the needle I will have to inject myself with. Then she told me to pinch a piece of my tummy (not easy to describe!) and gently insert the needle because she wanted me to see that it does not hurt in the least. I was extremely surprised to find how easy it was as I expected to be injecting into my arm. 

She then went on to explain our schedule. The first step will be taking the first lot of medication on the 4th January of Norethisterone tablets up until the 16th January. Then the injections will begin after that.  Mary has roughly estimated that my egg collection will be either 31st January or 3rd February. So I will only be on the medication a few weeks before the big egg collection!

So we had a phone call today from a pharmaceutical company telling us that the drugs will be arriving on Friday.  So as soon as Christmas and New Year is over we will be starting! Still doesn't feel real yet...<3

Off to Nottingham tomorrow!

So we are off to Nottingham tomorrow for the first time since June! We are going to be seeing Mary the PGD nurse to discuss my IVF treatment plan and have some blood tests taken in preparation for the beginning of the IVF in January. I am feeling extremely excited and cannot wait to go and find out more about what we will be doing! 

WE HAVE NEWS!!!!!!!!!!

Today has given me so much joy!!!! I had a phone call from the clinic in Nottingham with news that the PGD test is finished and that it has all worked! :) 

IVF will begin in January!!!! I am feeling so thankful right now...<3 We have been given an appointment at Nottingham for the 17th December at 10.00am to see the PGD nurse who is going to go through all of the injections and drugs that I will be taking. We also have to have some blood tests done to check for HIV and also check immunity for Hepatitis and Rubella.  

A pharmaceutical company will get in contact within the next couple of weeks to discuss how and when the drugs will be delivered to my house when I begin the IVF treatment. 

At the moment my head is just spinning...After waiting so long for something you just feel so much more appreciative of it when it comes along :) I just can't believe it's really happening now... <3 

Still more waiting...

Well it has been a long while since I blogged but we still have not heard anything about the IVF/PGD... 

I am really hoping that we will hear something from them soon!! It has nearly been 4 months since our DNA was sent to Genesis Genetics for the PGD part of the procedure and I am hoping that no news is good news! 

Since I last blogged many good things have occurred for me and my husband. The Apprenticeship he was on has been cut short because they have now hired him as an employee! I was so proud of him when he told me. So financially things are looking up for us. Some family rifts that occurred during my Huntington's Disease Testing process have been mended and some bridges have been built so to speak. We have both shared our birthdays, I am now 21 years old and Jay is 23 years old. 

The biggest and best news for me was when I was asked to become a Regional Advocate for wehaveaface.org. I have met/spoken to some wonderful people and really feel that I can help towards finding a cure for Huntington's Disease... God has opened so many doors of opportunity for us both this year and I feel so blessed... 

Really hoping and praying that I hear something soon about the IVF/PGD but trusting in God for his perfect timing <3 

Waiting...

Well it has been a while since I have blogged but there has not been anything to update about the IVF/PGD at present... 

A couple of months have passed now since we have given our DNA to CARE Fertility and I have had a tough time keeping myself busy whilst waiting. At first I wanted to wish this time away so that I could just hurry up and get on with the IVF treatment but I have come to realise that I have had a lot of growing to do and in this short space of time I have already changed so much.

After finding out about the Huntington's gene last year I felt that I had lost part of myself, the care-free, innocent part of me had been put to sleep that day. My direction had suddenly changed in life, some things didn't feel so important anymore and other things felt more important than ever. However I feel that slowly I am beginning to find myself again.

One thing that has really changed me is becoming a Christian. It has completely turned my whole life around. The continuous hole that I felt I needed to keep filling has gone. God has helped me to let go of many things and begin to heal from within. I have also met some amazing people through my faith who have supported me, inspired me and have given me hope. God has renewed me. His light has illuminated every dark corner of my life. 

Waiting has been the hardest thing I have ever done in my life... I am not a very patient person to say the least! I think though that this has been the best life lesson that I have learnt yet. Patience means to bear with and accept anything that is thrown your way. Knowing this now I feel that I am able to yield to patience more than I ever did before. I am learning to become more flexible and submissive to the future. 

"Do not let your hearts be troubled. Trust in God; trust also in me...." ~ Jesus. 

       

Change...

 We must become the change we want to see.   

- Gandhi, Mahatma

As I turned over my Inspirations calender for August a new quote lay before my eyes, "We must become the change we want to see". I was astonished at how such a simple short sentence had caught so much brilliance in it. I began to think how this sentence would apply to me..

My life has already changed so much in such a short period of time.  I have grown and grown in closeness with the Lord and He has blessed us greatly. My husband is loving his job and is growing himself every day, he has a purpose now.

My own purpose is being built, my first purpose is to God and my husband but now, this very moment, my desired purpose is developing and expanding. At this very moment scientists are looking at our DNA, musing and puzzling over all the complicated things required to build our genetic test for the embryos. 

Yet as all this is happening I must become the change I want to see.. I must find strength and look to the wonderful end result of this daunting process. I will find strength and my strength will be from the Lord, from my rock...He will give me the strength I need...

Next stage..

Today we had our phone call from Genesis Genetics in America. We had to give over our family history and discuss the genetic testing procedure. They are going to send out cheek swabs for us within the next couple of days in order to have our DNA. This will be from me, Jay and my mother. My father already has stored DNA which will be used. 

Once the cheek swabs have been received by Genesis Genetics they will begin to build a PGD test for us this may take up to 16 weeks. However we were told that the average PGD test takes about 12 weeks. After they have finished we can then begin IVF treatment.  

So the IVF may not begin until about October. In the meantime I am going to continue trying to build myself up in strength and keep myself busy also! 

Genesis Genetics..

We had an email today from Genesis Genetics requesting a conference call to go over the PGD process and get some family background information. 

Genesis Genetics liaison with Nottingham CARE Fertility in order to build my PGD test. They are based in America therefore they have to telephone us to get all the necessary information. 

This telephone call is the next important stage towards the procedure and will determine how quickly things move forward. So they have given us a date and time, Wednesday 24th July at 4.00pm and we have confirmed it. Getting super excited now!!! 

Beautiful picture...

IVF/PGD Form..

Today I received in the mail our IVF/PGD Form for Intention to proceed with Treatment. I have signed on the dotted line... No going back now!! 

I have mixed feelings surrounding the whole thing at the moment. Part of me is so excited and cannot wait to proceed with everything but the other part of me is really afraid, vulnerable and nervous as the reality of it all has really set in place now. 

I know its completely normal to feel this way. I am going to be putting my body through something that isn't particularly nice but I just have to keep focusing on the end result. The reason I am doing this is to get rid of the Huntington's disease from my family line and to have a baby, free from the HD and with it's whole life ahead of it. 

I am so lucky to have the constant support of my husband and my mum and I know they will be there for me every step of the way..But this journey really feels like I am on my own in it and I know it will test me in every possible way I could think of. Emotionally, physically and my faith will all be tested. Fear is one of the greatest evils that humans have to face and I know that I will be looking straight at it! 

So I just need to keep my mind focused on the baby at the end..<3

Lord,
Help me to keep focused on the end result. Help me to stay strong and not allow fear to whisper doubts into my mind. I will keep you in my thoughts constantly..

In the Name of Jesus Christ,
Amen.  

First day of Work..

Well today I saw Jay head off for his first day of work!! He was very nervous but very excited all at the same time!

We got up early at 7.15am and he put on his smart clothes. He had breakfast while I made his pack up lunch. Then he went out the door, got in his car, gave me a massive grin and drove off. 

I am SO proud of him and so happy for him! It has been a long hard road for him and not having a job has weighed upon him in so many ways. It has been a burden upon his back and it made him feel unworthy of anything. 

Only a few weeks ago I posted a prayer request online and had lots of response. Many people have been praying for Jay, including myself, to get a job and 3 weeks later he has one! God has blessed us and I thank Him with all my heart for the joy He has given my husband <3 

Thank you Lord..and thank you to everyone who has prayed for us and who has supported us <3

Not feeling great..

Got a nasty cold at the moment, so I am not feeling great at all! How an earth can you end up getting a cold in summer I'll never know!

Been through 3 boxes of tissues and had an unpleasant sleepless night. I really hope it goes away soon as I beginning to get extremely bored with being ill! I can only put up with it for like a day or two and then I get very fidgety. At the moment I have a completely bunged up head.

So I hope it goes away very soon before I go insane from being confined to the sofa and a box of tissues!!

The 'Strait' Gate..

I have just started to read The Pilgrim's Progress by John Bunyan and I must say I was very surprised at how good it is..

'Christian' is the protagonist of the allegory and he is journeying through the 'strait' gate  to get to the Celestial City for salvation. I love the thought of this 'strait' gate, the narrow path that leads towards Jesus. 

I imagine it as this long narrow country bridleway that is away from all the busyness and the noise but is peaceful and quiet. I imagine that for long stretches this path continues on in peaceful solitariness, surrounded by nature but then suddenly a large dual carriage motorway crosses your path and you have choice in front of you. You can stay on the 'strait' path or join the big motorway. The motorway is loud, busy and is full of people everywhere, dashing in front of one another and speeding towards their destination and it is easy to choose that path to join among the many. 

So which path do I choose? I choose the 'strait' gate which leads towards Jesus..


Matthew 7:13 'Enter ye in at the strait gate: for wide is the gate, and broad is the way, that leadeth to destruction, and many there be which go in thereat: 14 Because strait is the gate, and narrow is the way, which leadeth unto life, and few there be that find it'. 

Cannot believe it!

After 2 long years of my husband being out of work he has finally got a job! After we got  married in January we worked really hard saving lots of money towards a car. 

Jay took 3 times to pass his driving test and finally he passed in May. We managed to buy a car in April. We knew that in order to get a job he really needed his own transport. So when he passed his test we were over the moon!

He has been on the road for just over a month now and finally today after a surprise job interview suddenly dropped on him, he headed off feeling way more confident than he ever had before..

3 hours later he had a phone call from the company and good news he has the job! He starts on Monday and is super excited. It is an IT Apprenticeship which is something that he has always wanted. So 4 days a week he will be working and one day a week spent at college. The Apprenticeship will last 12 months only and be the end he will be on a normal wage. 

I am so happy for him and I know this will boost his confidence even more! I would also like to thank you all those people who prayed for us <3

God bless you.   

:) Me and Jay

Me and My wonderful husband <3

First Appointment.

Well I am glad to say that is my first appointment over with! It was an extremely long journey yesterday. We set off at 11.20am and we found it fairly easy to get on the M1. We were on the M1 for about an hour and it was a smooth drive without any problems but then when we got off at the junction things became more complicated. We got lost on the first roundabout after coming off the M1 and ended up taking a massive detour! Finally after navigating 3 complex roundabouts we arrived at CARE Fertility in Nottingham about 3 minutes late.   

At this point I was feeling extremely nervous, hot, flustered and shaky. As we took a seat in a very busy waiting room I tried my hardest to calm my mind. Despite the fact that we were late they seemed to be running late in there too. We had to fill in some consent forms while we were waiting and then finally after what felt like an age I was called through for my transvaginal scan. They left me in a small room to get changed and as I sat on the bed, I took deep breaths to try and calm myself down. Two nurses entered the room, one for recording the results of the scan and the other to perform the scan. After an uncomfortable start, the scan went very well and I wouldn't be afraid to have another one now. Happily I was told that everything looked very normal. 

I went back to the waiting room and relief washed over me. For me the hardest part was done. My husband had gone off for his semen sample! He had the easy part! 

No sooner had we settled down in the waiting room again we were called for our first appointment with the geneticist. She went through a lot of stuff that we already knew but it's all part of procedure. She did tell us that if we are happy to proceed with everything that they then have to build up a genetic test for us which might take up to 4 months. It all depends how quickly things move along but we are just going with the flow anyway!

After an hour long appointment with the geneticist we then went off for a bite to eat in the car as we were both starving!! At this point it was about 3.00pm and we were both beginning to feel very tired but we only had one appointment to go!

So we went back to the waiting room and was called by a nurse to have our height, weight, blood pressure and CO2 levels tested. The nurse calculated our BMI which was both normal, blood pressure was fine and CO2 levels were took to check that we are both non-smokers which we are. 

Then there was a very long wait for the next appointment with the IVF doctor. Annoyingly there was a TV programme on about food in the waiting room and it was making both me and my husband even hungrier than we already were!! Our appointment was for 4.00pm but we didn't get in there till about 4.15pm. 

The doctor was very nice and she explained everything clearly about the IVF procedure. She told us that my scan shown that I was healthy and had a very high chance of achieving a successful pregnancy as I have 28 egg follicles out of a possible 30. My husband Jason was then told that his sperm sample was also healthy and very good.

So overall our chances of conceiving are high, it's just pot luck how many embryos are affected with the Huntington's disease. We were told that we would have to make a decision about whether we wanted to proceed and let them know. 

After a very long day we finally went home and had  some well deserved chips! 

We have decided to proceed with the IVF/PGD and have told them at CARE fertility, now we just have to wait for the next stage but we both feel very lucky to be having this opportunity! 

Tomorrow is the day!!!!

Feeling extremely :S now!!!! My belly has about a million butterflies causing havoc in my digestive system! 

Woke up very early this morning at 5.30am - couldn't sleep any more. Have no idea how I am going to sleep tonight! 

I am trying not to get too overexcited just yet though and I continue to pray for the peace of the Lord to fill me.. <3 

Not long now!

3 days to go until my appointment!! Getting really nervous now..

Nervous!!

Getting really nervous now, it is so close to the first appointment and I cannot think of anything else. Next Wednesday could not come soon enough for me!

At least for the next few days I won't have much time to think about it as I am going to be really busy. Tomorrow I am going back to the healing clinic as I really feel the Lord drawing me back...

I continue to pray for the peace of God that passes all understanding to fill me..

The happiest day of my life <3 

Healing..

Two days ago  I went through the most wonderful experience in my life. I decided to go to a local Christian healing clinic as my faith in the Lord has been growing and growing since last year.

Two older ladies took me to a small room with very comfortable chairs and asked me to explain what I wanted healing from. As well as my HD diagnosis last year I have also been suffering from M.E. for 8 years. If you haven't heard of M.E. it is a long-term fluctuating illness and sufferers mainly experience persistent fatigue and pain. I have had many relapses since I first got the illness when I was 14 years old. 

So I asked the ladies if the Lord could give me my energy back. I had so much energy before I got ill. They laid hands on me and prayed for healing of many areas in my life. They prayed for healing from the top of my head to the sole of my feet. They prayed for a healthy child to come from the IVF/PGD. And whilst they were praying I felt a strange sense of lightness, I almost felt light headed. When they had finished the prayers and I walked out of the room my whole self felt light as though a huge burden had been lifted from my shoulders..

I wasn't sure when I first decided to go whether it would come to anything. I didn't know if I was going to be healed but when I awoke the next day I opened my eyes and there was this deep calm. I got out of bed and again I felt so light, light as a feather. Still today as I write this I feel this lightness of mind and soul and my heart feels full of joy and happiness. I know that God has healed me, he has taken my broken body and spirit and revived it! God is our creator, he made us and therefore he knows how to fix us. He knows every affliction of the body and mind. 

"If you diligently heed the voice of the LORD your God and do what is right in His sight, give ear to His commandments and keep all His statutes, I will put none of the diseases on your which I have brought on the Egyptians. For I am the LORD God who heals you. --EXODUS 15:26, NKJV"

I have decided to go back to the healing clinic as often as I can and to anyone out there who is suffering in body or mind I would highly recommend going to a healing clinic. I shall continue praying thanks to the Lord. 

The Beginning..

I am hoping by writing this blog that there is someone else out there that might be going through the same thing and could maybe give me some advice on how to cope!

There is no easy way to explain this extremely complicated story but I will start with the main fact - last year I was diagnosed with the Huntington's disease gene. At the time I found out about it I was only 18 and it was a huge thing to go through. Now here I am one year on a completely different person. I have completely  changed since the diagnosis, all I want to do now is to just get on with life and enjoy it!

So this year me and my husband are planning on having a child through a procedure called IVF/PGD. PGD stands for Pre-implantation genetic diagnosis (now that's a mouthful!) and it enables people to avoid passing their inherited condition to their potential children and the IVF part will hopefully get me pregnant! 

So far we have been referred to a clinic called CARE Fertility and we have our first appointment for the 19th June! I can barely think of anything else. I am so excited and nervous all at the same time!  

The first appointment involves a very long journey, seeing a Geneticist, a consultation with an IVF doctor and also a semen analysis from my husband and I have to have a transvaginal scan. That is the only part I am not really looking forward to and if anyone who has been through this has a story to share please contact me! 

Well anyhow that is the beginning of my journey and I hope to have much more to share soon :)