Sunday 18 October 2015

Signs of Hope & Utter Sadness

"Dear Sebastian

It's been 9 weeks since you've been gone. Sometimes my chest hurts so bad I think I am dying; I know I am not, and I know its silly to say that when you have experienced the feeling of death. But that is how heartbreak feels to me. I now know so much more about how grief shows its ugly face. I have likened to the idea that grief is as if I am standing on the beach and the pain and torment of missing you are the waves. Some waves are small and just keep my feet wet, but it is always there. Other days the waves are so big that it knocks me over and I struggle to stand up. The waves haven't won though, I am still fighting for you.

I know the feeling of being stuck and standing still, like the world is spinning around me and I cant catch a breath. But please know, I breathe every breath for you. There is not a minute I do not think about you. I've devoted my life to you. I miss you more than anything. If my tears and words could bring you back, I am sure you would be home by now. I wish so badly that I could bring you back, I would do anything to just be able to see your smile again and hold you. I've never felt so numb before, so empty. Each day that goes past I want to honour you. I want the world to know about the little life that was lost and the impact you have had. You have taught me so much about life, myself and family. You have given so much and taken so little. I want you to experience a life with happiness, I want to share in that happiness with you.

I know you are with your Dad and I; I know that you you're watching over us everyday. I see your signs and I pray you're telling me that you are OK. I love you my baby boy. You mean the world to me. You inspire me to be a better person.

Love you always and forever.
Mummy"

------------------------------------------------------------------------------------------------------------------------
I do know Sebastian is with me. I've been told that and I've had pretty blatant signs. Even if these signs can be scientifically proven, I don't care. I'm a grieving mother and I will believe in what I need to in order to get through.

But just so we are on the same page, here are the signs I have received:

The Medium/Psychic Reading
When I was pregnant, only a few weeks before I found out Sebastian had passed away, we went and saw a Medium (who did not know I was pregnant). She told me that there was a ball of light around me and it follows me everywhere. She asked if I had a miscarriage at some time? I told her no. Little did I know, it was around the corner. She was insistent it was not symbolic of anyone else's baby. She did not continue on this subject as I became quire worried.

Rabbits
If you've been reading my blog you would know how rabbits are now special to us. The last day I was pregnant with Sebastian we saw 2 rabbits on the beach. For the next 10 days we saw more in places that were unexpected. We have since seen rabbits on days that were of significance (for instance, fathers day). How many people can say that they have seen a rabbit in different locations on consecutive days? The day that Sebastian was born, my Father and Step Mum were with me. When they returned home, a rabbit was in their street. We would all continue to see them non-stop. Mum was also driving one day on her way to my house. I was pretty upset. As she was talking to me on the phone she saw a white rabbit sitting on the side of the road. James' aunty could not make it to Sebastian's funeral and also saw a rabbit in an unusual place the day of the funeral. The point is, we have seen so many rabbits!
Without knowing the connection, we have also received many gifts (books, frames, stuffed animals) all of which have been (or about) rabbits! I think it is truly awesome, and now whenever I see one (I always pray one crosses my path on bad days) I think of Sebastian and know that he is OK.

Beetles
There have been two occasions where I was very upset in public. One was when James decided I needed to go back to our favourite picnic spot at night and remember Sebastian there; the other was at a child's birthday party.

When we were going to the picnic spot, at 4 different locations and times that day. We had a beetle fly on to one of our arms. They were different in colour, but were all small. It was enough for us to believe it was a sign and accept them. Again, when do you get 4 beetles on your same arm on the same day? Similarly, at the birthday party, a beetle flew on me in the same position on my arm.

11:11
I know people can say this is a coincidence, but I seem to always look at the clock lately when it is 11:11. I always make a wish for Sebastian, but I can't tell you what it is - it might not come true then!

The noisy vase
We have a vase with our remotes in it at home, one night there was only one remote in it. James and I sat on the lounge next to it. We were not near the vase, nor were we looking at it. The windows were not open and there was no breeze. Suddenly we heard the noise of a remote being dropped into it and moving around the vase. It lasted for about 2-3 seconds and we could not explain it. I looked in the vase (at which time it had stopped) and the one remote wouldn't have been able to move/fall by itself due to its size. We have no idea how this happened.

The chair
The chair is probably the weirdest of all. I was in bed one morning on my phone (my cats were with me) and James was at work. I heard a loud noise (I thought it was the broom falling over), that went for quite a few seconds - maybe 10. My cats jumped up and ran to the door, they were all bushy tailed and hiding behind the corner with jus their heads peering out. I went out and looked to see that our dining room chair was in the middle of our hallway. It was not the closest dining chair either, it was the one furthest away. It's a reasonably heavy chair. I called James and asked him if he left the chair in the hallway. He said no. He didn't believe it. He made me check all the doors and windows to make sure no one had broken in (the chair was placed below our man hole in the roof). Obviously everything was locked and no one was in sight. My handbag remained on the chair where I left it the night before. It didn't move. I tried different things to see if that could have moved it (pulling the chair by my bag handle etc.) but the bag would just fall off. I can't explain it!

Of course my favourite was the blue orb that appeared in a photo at Sebastian's funeral - you'll have to go back to that post to see it. 

I am sure we have had other little signs, and I will always continue to ask Sebastian for help or strength through certain situations. I know he is now my guiding star.  



Sending love in a candle

October 15th is the international 'wave of light' remembrance day, where it is encouraged that at 7pm everyone lights a candle in memory of the babies and infants taken too soon.

James and I attended the remembrance ceremony held at Pinegrove Cemetery in Minchinbury, NSW. The event was hosted by Guardian Funerals and Angel Gowns Australia. It was a beautiful ceremony, and the songs they played made me tear up. It was not long until a box of tissues circulated the chapel for all the grieving parents.

Whilst I was at the service, I was finally able to meet Fiona. Fiona is the founder of Angel Gowns and it was her that heard my story and hand-delivered a beautiful wrap and gown the very next day for Sebastian to be buried in. It was so nice to be able to thank her for her efforts in person. I truly can't express my gratitude enough for that organisation and for Fiona's commitment (I recently heard a rumour that she is nominated for Australian of the Year, which I truly believe she deserves. If this is able to be voted on, I strongly encourage everyone to vote for her - she is an inspiring woman).

The songs that were played were all very heart warming, and I particularly liked one (gone too soon by Daughtry). I have placed the list of them all here, if you are interested in hearing them I recommend looking them up - have some tissues ready!



During the service we were all supported to write on a candle and place it on the grass to make a giant angel, it looked beautiful once it was all lit up. There was already a candle with Sebastian's name on it, so we wrote a little message each to him. Mine read "we miss you so much" and James' read, "you're the best little guy ever". We carefully selected where on the angel the candles should be placed (James chose on the wing in the corner and slightly away from the others so he could see it later when it was lit; I chose to place the candle at the very top in the halo, to signify him as being in the safest part of an angel).  I also wrote a couple more candles out, one for the little baby girl (Madison) who passed away in 2012, whom we received a bear in honour of; the other for a friend whose baby boy, James had also passed away a couple of years ago.


I would also like to thank my many friends and family for lighting a candle also. It meant a lot to me to see you all light one to remember our little boy and the other babies who grew their wings too soon. The love and support we receive every day is amazing, and to be honest we wouldn't be where we are without you. I truly am blessed to have you all in my life.

Here are the candles people had lit for Sebastian.


And this beautiful candle that has been personalised was a gift from my cousin Kylie (yes, the same cousin who organised the ribbons for Sebastian's funeral), she is such a beautiful person and has been an amazing support to me. I look forward to lighting Sebastian's candle on special occasions and when I miss him (OK, I will try not to light it every day!).





Thursday 8 October 2015

Siblings for Sebastian - Will we get our rainbow baby?


Future children have been on my mind a lot lately. We miss Sebastian more than ever and our hearts ache trying to fill a void in us. We know that we will never replace Sebastian, and we don’t want to.  It is funny how when you lose a baby your mind is full of different thoughts, some hopeful, more not. I should be 28 weeks pregnant right now, full of hope. Not empty and full of wonder whether future siblings for Sebastian will be joining him in heaven..
The main thoughts we have had are that of what others would think of us if we were to fall again so soon. I have spoken to another Mother who has an angel baby and she was ridiculed for falling straight after, people claiming that she had already moved on from her baby she lost and wanted to forget them. I want everyone to know that there is no way in this world that I would want to replace Sebastian, and there is definitely no way I could ever forget him or love him any less once another child comes along. There will always be a place in my heart for him, and a part of me missing that died when he did.

Another thought that pops into my head is whether Sebastian would feel like we are replacing him. I believe that he is with us in spirit and watching down on his family from heaven, guiding us. But I would be so hurt for him to think that he has been replaced. There is nothing anyone can say to this to help me come to terms with it – nobody really knows the answer as to whether he is here or not. But I have been speaking to him a lot, and I have asked him that when he is ready, and he believes we are ready, we would like him to select a sibling for him and send them to us. This is what gets me through all these different thoughts.
It is a very difficult decision as to whether to have children again or not, especially when referring to Sebastian’s autopsy results and seeing the pain he went through and knowing that there is a chance he did not receive his illness spontaneously. We have had people say to us “don’t worry, you can have another” or “just try again, lightening doesn’t strike twice”.. well you know what!? These comments hurt. We wanted Sebastian so to just go and have another baby, implies that he can be replaced and that void in our hearts will disappear (I just want to say that I know people make these comments to try and give us hope, and we appreciate this… I think the nicest remark we have had said was “I hope that one day you both can experience excitement and happiness again”, because the truth is, so do we). These comments also hurt because we may not ever get a healthy baby.

However, we want answers. We want to know whether we gave him the genes that took his life. We want to know how this could have happened to him; and we also want to know what the recurrence rate is for future siblings… and so it goes like this….
If you read my post about Sebastian’s autopsy results, you would know that it is thought that he had Type 2 Osteogenesis Imperfecta as well as a microdeletion of Chromosome 15q11.2, both these diagnoses are unrelated. Therefore, we are now fighting two battles.

After we received Sebastian’s autopsy results, they sent us to get DNA tests completed. This involved a simple blood test from each of us. They will then use our DNA and compare it to Sebastian’s to see whether his affected genes are identical to one of ours (in a nutshell). The blood test we received though did have a little bit of a humours story as it was completed at the Children’s hospital where Sebastian’s autopsy was done. So we waited in the waiting room with lots of little kids and babies who bravely got their tests completed. We felt silly in that we both dread blood tests, yet these incredibly brave kids, some who had cancer, were getting it- ‘toughen up’ I said to myself.
One of the mothers complained to her friend that adults were using the facilities, I felt like telling her our son had died and they need our blood for his autopsy results. But, of course I didn’t.

At the end of the test we were each given a kid’s band-aid. It was hilarious because the nurse specifically picked out a purple Minnie mouse one for James. He was not impressed. 


 Will Sebastian’s siblings get Type 2 Osteogenesis Imperfecta also?

We don’t know. The results could take years before we know the answer to this. You see, this is a genetic condition, it could have been spontaneous and not have come from myself or James, or it may have. The reason why it could take years is that our chromosomes are like encyclopaedias and the genes within these chromosomes as chapters, the current test that is being performed will first go through these encyclopaedias and see if a relevant chapter is missing. If not, they will then perform another test to see if a page is missing. If no result is there, they will then perform the test again and see if a paragraph, then a sentence, then a word is missing or a spelling mistake is observed. This testing can take literally forever. There is also no guarantee that they will find anything missing or wrong. We may never get an answer.
However, if they find that Sebastian’s OI was spontaneous, then the chances of recurrence are very low. In fact, we would have the same chance of this happening again as any other expectant parent. We pray this is the case.

If we find out that Sebastian was given an affected gene from myself or James, the chances of recurrence increase from 25% to 50% for our next children.  If this is the case, I will explain down below what our options are…

Will Sebastian’s siblings also have a microdeletion of chromosome 15q11.2?
The answer is similar to the above, except we will know within 6-8 weeks from our DNA test. That means, we will know by the end of November (hopefully!).

The chances of this microdeletion occurring depend on whether myself or James are carriers. We were told by another parent that 10% of people with this microdeletion have it spontaneously, whilst the rest are given it from parents. The microdeletion is incredibly rare, so to be in the 10% is even less common – great.

If one of us is a carrier, there is a 50% chance our next child will get it also. There is also a chance that we (as a person also affected) may develop a physical disability in the future – double ouch.
This is not a lethal condition, however its effect on life can be vast. Instead of me explaining it all to you, I think the best bet is to read about it here: Rare Chromosomes


Future pregnancy options..

When we decide to have another baby our options will depend on the results from the above DNA test. We have not made any decisions yet as to what we plan on doing, but I just thought I would give you all the options so you can see how difficult it is…

  1. We can take the chance and try for another baby naturally, but we will need to prepare ourselves that our next baby may also die. If we went this path we will be monitored by the tertiary foetal welfare unit at a bigger hospital. I will also be required to complete a CVS test (similar to the amnio test, but a bigger needle as they take a sample of DNA from the placenta) at 10 weeks gestation. This test comes, no doubt will be just as painful, and also comes with the risk of miscarriage. If the test comes back positive, the doctors then will give us an ultimatum for interrupting the pregnancy. They will also perform early ultrasounds to try and pick up any skeletal problems – however these might not be observable to 20 weeks. There is a chance that if affected, our next baby could die in utero again.
  2. If we find out that one of us are carriers to either Skeletal Dysplasia (OI)  and/or the microdeletion, we could consider using Preimplamantation Genetic Diagnosis (PGD) & Preimplamantation Genetic Screening (PGS) IVF. This means that we would go through the normal IVF process but they will test the embryos to see whether they are affected before implanting them. However, this is not completely covered by Medicare and from the people who I have spoken to that have done this process, it is estimated to cost $20,000, with $15,000 out of our pockets. There is no guarantee that this process will work, and whilst chances of miscarriage are slightly minimised, this does not prevent our next child from developing another rare form of disease and also being born sleeping from other causes (womb infection, placenta problems etc). There is also the chance that we will need multiple attempts before an embryo ‘sticks’ when transferred to me (each additional transfer does require more money).  I don’t like mentioning the money side of things, because if I could have done this to prevent Sebastian going through what he did, than I would have, regardless of costing.
  3. If we find that one of us is a carrier for microdeletion, but they have not yet identified the gene leading to skeletal dysplasia. We can do PGS IVF (same process and costs as above). However, we run the risk that our baby will also have skeletal dysplasia and die.

We cannot explore PGD IVF until they have solved the mystery of Sebastian’s Osteogenesis Imperfecta (if it is even that), and which gene mutation is responsible. As I said before, this could be years away and we may therefore have a very long wait, although our geneticist has said she is hopeful that it will only be 6 months.

--------------------------------------------------------------------------------------------------------------

As sad and heartbreaking as it is, we can sort of find the silver lining in that we are thankful for Sebastian. Without Sebastian we would never have known about the chromosome deletion, and if we are  carriers, he has potentially saved his sibling’s lives, or from a lifetime of suffering. If we are carriers, he has also helped us to concentrate on our own health in preparation for the small possibility that we may develop a form of physical disability in the future. For a baby who was in our lives for such a short time, he has changed ours forever in multiple ways.

----------------------------------------------------------------------------------------------------------------

 So I guess, we really can’t just ‘try again’, there are so many things that impede on that decision.

Now we just sit and wait,

We wait for the amazing medical team to find some results,

We wait for our life to be pathed before us,

We wait, pray and search for hope that the right path will become clear soon.

What would you do?

Thursday 1 October 2015

Support and awareness for the month of October

I just want to slightly divert away from Sebastian's story for one post and help to raise awareness for two things close to my heart. You see, October is Pregnancy and Infant Loss Awareness month, with Pregnancy and infant loss remembrance day being on the 15th October. However, this month is also National Dwarfism Awareness month - what are the chances that both are relevant to Sebastian!? 

In honour of this month, I want to share a couple of things with you about both pregnancy loss and dwarfism, my aim of doing this is so we can better support parents and ensure they never feel alone.

--------------------------------------------------------------------------------------------------------------------------
**PREGNANCY & INFANT LOSS **


Firstly, I have been asked a few times (and it's only been 6 weeks so far), what friends and family can do to help someone they love whose child has grown wings. Now I'm not an expert on this at all, but I can talk from my own experience so far. If I think of more as time goes by, I will add them in the comments section. I encourage you to do the same if you can think of something that has helped you or someone else.

Whilst the parents going through the loss do not see themselves or their baby as another statistic. The sad truth is that 1in 4 pregnancies end in miscarriage or still birth. Specifically, in Australia, over 150 000 parents lose a baby during pregnancy each year. That Is a huge number of women walking around with this grief and I have made it my own personal goal to help as many of these mums and dads as I can. Here is how you can also help:

Things you can do right now:


1) If you want to ensure a mum similar to what I went through has a bear to hold as she leave the hospital as well as knowledge of local support groups and services: click HERE (this will also keep Sebastian's name alive).

2) If you would like to donate a wedding or formal dress, or money, so that a baby has something to wear to their funeral, click HERE (Angel Gowns were so quick to provide me with a gown for Sebastian, I had it within 12 hours of informing them and it was perfectly made. It saved us the stress of finding something perfect for him to wear )

3) you can light a candle on October 15 to remember Sebastian and a the other babies taken to soon. This is the official Remembrance Day for all babies lost during pregnancy. I would love to see photos of your candle lit. 

4) If you would like to further raise awareness for pregnancy and infant loss, consider turning your display picture pink and blue with this link on fb : 

When someone you know has lost a baby / child:

Whilst there is nothing anyone can say or do that will take away the pain, there are always going to be awkward things that will get said accidentally and no matter what you do, the mother and father will still be sad... But if you can put a smile on their face for the briefest second, than it is worth it. Consider doing the following:

- Be there to support the family, send them a meaningful card or message. Be available to listen without judgement. Help them find answers if they are searching (whether spiritually, through religion, or scientifically). My mum sent me the most beautiful text message that helped me accept what happened to Sebastian, I will never forget it. 

- Refer to their baby by name. Nothing upsets me more than someone (mostly medical staff) calling Sebastian a "foetus". Their baby died and no matter the age of the baby, they are a mother and father.
- Don't be afraid to talk about their baby (you will have to gauge the parents on this), but just like any mother most will want to talk about their child they are so proud of. Don't be afraid that you will upset the mum by raising the topic, it does hurt, but we love hearing that other people haven't forgotten about them, even years down the track.

- Make sure the dad is ok. They grieve too, albeit differently, but they still grieve. Most men I spoke to whom are in the same position as James have returned to normal routine ASAP. And that is ok. Usually at home they are trying to be strong and keep the household together while the mum can't bring herself to get out of bed. Ensure he has opportunity to talk to others; find him a contact number for grieving dads, hang out with the kids or the mum for a bit so he can have a beer at the pub. And make sure you ask him if he is ok. He will say yes, but he won't be. There is a great book called "Stronger and Tender" it is only short, but has some great explanations and ideas on what Dad's can do during the grieving process. It has actual hands-on ideas, like building a memory box for the child's belonging etc. I think most men would find it useful (if they like reading) and I think women can learn from it also.
- Be available to listen to the Mum and Dad. Everyone grieves differently and at that stage they don't need anyone judging them, their thoughts or their actions. So long as they are being safe, support them in what ever they need to do to get through the day. If they don't want to talk, sit and cry with them, hug them- Whatever will help them. If they don't want to see anyone (highly likely), give them space. Consider screening calls for them and keep family and friends updated on how they are doing. Trust me, they will receive lots of messages and calls in the first few weeks from all sorts of people - friends, family, colleagues, medical staff, social workers and even strangers who hear the news. Making small talk is the last thing they want to do and most phone calls will end in awkward silence or the deafening noise of the mum sobbing and unable to say anything. If you call, be prepared for this. Please note, we know that you are just trying to help, and a phone call is definitely a nice gesture. Speak to people close to them and see whether a call is better, or a message.

- It's ok to send flowers, but be aware they die. I was fine with this and loved the sentiment ( we had 11 bouquets all up!). Others may not like the idea that they die. 

- Try to give a gift that honours the memory of the baby - my favourites that I received included: a nice frame with baby's  birth details inside, an engraved love heart necklace with baby's name, an engraved box for birth certificate, a crochet blanket with baby's name on it, a teddy to take to the hospital - the baby may be buried with it, or it may be nice for the mum to cuddle it as she leaves the hospital empty handed, a baby book so all birth info can be recorded nicely. A photo album, outfit for baby to be buried in, a plant that flowers on their birthday month (we were given a dwarf peach tree, it was unplanned the type - but we thought it was perfect for our little boy who had a severe form of dwarfism; it will flower each year in August around his birthday).

- Depending on when the baby dies, be sure to congratulate the parents on having a boy/girl. We received a "it's a boy" balloon and it was nice to have some positivity around the birth of our sleeping angel. We also had some friends congratulate us on delivering him and being proud parents.
- Cook  and deliver meals that can be frozen- chances are the parents aren't going to be eating, they definitely won't feel like cooking

- If going to visit or being nearby, stop off and get some groceries for them - they won't want to be going to the shops for eggs, milk, bread, coffee, etc., so consider doing that for them. If they have pets or other kids, also get some food for them - maybe a treat to keep them happy.

- Offer to take other kids out for a while. They probably won't understand what is going on or why mum and dad are crying so much. This provides respite to both the child and parents (I know we don't have other children, but it is something that other mum's have been grateful for).
- Be prepared to drop things off at the door and leave. Don't expect to be invited in or to see/talk to them. Don't make them feel guilty for it either.

- Help organise anything for funeral - balloon release, paper boat release, matching ribbons for everyone to wear, outfit for baby (see angel gowns below), outfit for parents. You can read my posts about Sebastian's funeral to get an idea of what some people did for us.

- Support the family to write their feelings down, write a letter to the baby etc. We found this very useful in our situation and then used the letter at Sebastian's funeral.
- Help find the parents a support group in their area. The hospitals social worker can probably help with this. alternatively, I have put a link below to Bears of Hope. There are a lot of Facebook support groups too.

- In weeks and months down the track, ask the parents how they are going, and still be available to listen. Still talk about the baby.
- Refer to relevant family members as 'grandparents', 'aunts' and 'uncles'  and ensure they have support to - they don't want to lose this baby  from their family either and they definitely don't want to see their son/daughter/sister/brother  in this pain. Everyone will be hurting and feeling helpless.

- Remember the baby's birthday and help the parents celebrate it each year.

- Do what you can to help remember the baby also. We have had people light candles for Sebastian at church, build a garden at their house with a little rabbit statue in it, have something symbolic tattooed on them for Sebastian (it does not have to be drastic, but something sweet and small depending on your relationship with the parents).

- Organise a service to do things at the hospital - get foot prints, photography by professional, moulds of feet and hands, a blessing from a priest etc.

- Don't expect to be shown a picture of the baby and don't treat the photo as if it is anything other than a new born baby. Comment on facial features that are similar to the parents and how precious and peaceful the baby looks.

- Don't say unhelpful things like "you can just have another" or "youll get over this" - we don't want to get over this, we want to "learn to cope better" and "find ways to remember him that will make you smile" - for instance seeing a rabbit makes me smile. Another thing that is nice to hear (for parents who are planning on trying for another baby) is talking about how their angel baby will help choose a perfect sibling (or rainbow baby) for them. Encourage the parents to ask their angel baby to send a sibling when they feel both the angel and parents are ready.

- Don't tell them to get over it, no matter how long it has been, it will always hurt.


- Subtly protect them from pregnancy announcements, births of healthy babies, pregnant women etc. If you post a lot of photos about babies, have them minimised or limit who can see them. If an event is coming up and a pregnant lady will be there, warn them.  Everyone is triggered by different things and some people may be ok with these situations.

- Go wth the mum to future appointments at the hospital etc. or if she has to visit someone in the same hospital or a similar ward. You may not be needed if the husband is attending also.

- Ask if they would like you to inform work etc, so they don't have to worry about people asking how the pregnancy is going. This is something they will be worried about if everyone knows they are pregnant.

- Support them to return baby items to the store if they wish (items can be returned outside of policy if the baby has died) 

- If the baby is not eligible for birth certificate, help them get a recognition of life certificate from a charity listed within this post.

- Find physical things that can be a reminder in the baby's home - in addition the items I have already wrote about,  my aunty bought me a glass heart with a poem about my son's smile; my mum bought me a little rabbit statue for Sebastian's shelf.

Other volunteer organisations include:
- Heartfelt Photography - we did not use this organisation, however I have heard amazing things about them.
- SANDS - They provide free counselling services to both parents and have a lot of resources for Dads!
- Bears of Hope - Simply an amazing organisation who do a lot of different things to support parents who have lost a baby.
- Angel Gowns - they will provide urgent clothes for a baby who has nothing to wear at the funeral etc. The gowns are hand made from donated wedding dresses. They are perfect and have a high turn around. They also do a lot of awareness.

If you can think of more useful things, please consider writing them in the comments below. I have also put some books that may be useful for the family's current and future children, here:





---------------------------------------------------------------------------------------------------------------
**SKELETAL DYSPLASIA**

Now, I don't have much advice for skeletal dysplasia as my son did not survive it, but I have met a wonderful mum who has three daughters, two with Diastrophic Dysplasia - a form of Skeletal Dysplasia. This Mum has been an amazing support to me and is doing amazing things  to raise awareness about this condition. I know that their type of Skeletal Dysplasia is different (well, there are over 200 different types) however, her daughters survived the odds as they were also diagnosed with having a lethal form of Skeletal Dysplasia when she was pregnant. The girls now live healthy, happy lives. You can find the Facebook page here:  Faith, Hope & Joy - Diastrophic Dysplasia  I encourage you to  like her Facebook page and share her posts for the month of October. 

Type 2 Osteogenesis Imperfecta is what our little boy is thought to have had. If you want to read about and make yourself familiar with the suffering Sebastian endured as well as thousands of other people, you can click on this link Fast Facts - Osteogenesis Imperfecta

Please help with raising awareness by sharing this blog also. I know we can work together as a community and ensure that no mother or father ever feels alone.