special child

Hi there all,

I just wanted to share my story with you about our special little man Samual.

Special child of mine:


Born 6th February 2000.

A long awaited dream for Michael and I to finally have our own child. Born 7lb 15oz at 08:29am.

At 6 days old Samual and I were discharged from hospital and Samual had dropped his birth weight, which we were told was quite normal.

At 21 days old and many trips to the Health Centre Samual had managed to drop from his birth weight to 4lb 3oz. A quick trip to My GP and Samual was sent to Monash Medical Centre and admitted suspecting he had a condition called Cystic Fibrosis.

After 12 days in hospital with Samual being prodded and poked and being placed on a medicated formula, which helped him to gain weight and also Genetic Chromosome testing, Samual and I again were discharged from Hospital and ready to start again.

At 8 weeks old I returned with Samual to Monash for what we thought was a follow up check for the stay we had had and to find out the results of the tests taken during that stay. That was when we were told that Samual suffered from what is called a strider (floppy larynx, squeaky breathing). But then in the next breath we were hit with the devastating new that our son had a Genetic Disorder, an Unbalanced chromosome translocation on chromosomes 3 and 16. Chromosome 3 triplicated and missing a large portion of the 16th Chromosome.


We asked the Genetic team at Monash many questions and the only answer we were given was that Samual was the only person listed in the world with this particular genetic abnormality and that he would be globally Developmentally Delayed.

We have since been told that this was actually incorrect and that Samuals 16th chromosomes are actually normal although where the 3rd chromosomes should be and that his 3rd chromosome is missing a piece and he has an attachment of a 3rd 16th chromosome attached to the top and is actually in the place where the 16th chromosome should be.

Samual Suffers from Hypotonia (floppy muscles), Epilepsy, Kawasaki Disease (where the heart valves dilate), he also has a small heart murmur, suffers from Asthma, has moderate to severe speech delay, has a condition called pseudomonas (where he has become resistant to antibiotics) and has also had several operations in his short life including, a Nissan fundoplication, to stop him from vomiting due to severe gastro-oesophageal reflux, tonsillectomy, uvulectomy, adenoids removed twice and has also had 3 sets of drainage tubes (grommets) Due for his 4th set soon, and several other hospital stays due to pneumonia and breathing difficulties.

Samual has just turned 5 years old and is attending Pre-School this year.

At the first diagnosis of Samual’s conditions we were told that Samual would possibly not walk due to the low muscle tone in his body, yet at the age of 2 years Samual took his first steps across the lounge floor to his Daddy when he arrived home from work one evening. We were also told that Samual would not talk either as he was not a chatty baby, but at the age of 2 ½ Samual began babbling and calling everything he saw and pointed to da da or do do. And now can sign if he we cant understand what he is trying to tell us. This babbling went on until he began speech pathology at the age of 3 and now at the age of 5 is saying most words a child of his age would be saying however with some difficulty.

After speaking with the Genetic team at Monash on a few occasions both Michael and I were advised that in our best interest it would be un wise to have future children due to the Chromosome abnormality that Samual has and that for each child that we had after Samual the chances would be that the missing pieces of Chromosomes would possibly miss more and that we could go on to have a severely abnormally genetic make up child or children in the future. However after attending a seminar at the Royal Children’s Hospital in Melbourne one evening this was said to be not as true as we were originally told.

We then decided to have some counselling and spoke with the genetics team and also our GP and decided to attempt having at least one more child. So Michael went in for a Vasectomy reversal.

It has been nearly 2 years of trying to conceive our second child. We have spoken with our Doctor and have had testing done and have found out that we have only a 2 % chance of conceiving naturally, and that it would be a miracle if we were to ever conceive naturally. We have also been told that I.V.F could be an option however there would be risks there also. When told this we were already 6weeks pregnant with our second child. But is was not meant to be and we went on to miscarry.

So it is intended that Samual is our only child at this stage, and possibly will only ever be our only child.

We believe with out a doubt that Samual is a true blessing and Gift from God. As it has been medically proven that any mix up with the 16th Chromosome, which Samual has, is to do with Miscarriage and medically should not have been carried full term or even born.

But we know that Samual was to be born as God planned him.

Samual is a wonderful and joyful child, he loves to do all the things most little boys love to do….play in the dirt, play trucks and cars and of course he just loves Thomas the Tank Engine and Brum. Samual has been learning to Swim for the past 18mths and has just passed his 2nd level in individual swimming, however due to recurrent ear infections he is now unable to continue in this area of sport.

Samual has a great nature and finds it easy to make friends and loves to shake hands with new people that he meets. Samual always has something caring to say and is said to have wonderful manners. One of his favourite phrases is ……”excuse me”…just to get your attention, even if he doesn’t say anything after he has your attention.


Samual has a contagious smile and an infections laugh.

What else could parents want for their child but a heart full of love and joy?

Samual is very much loved and is truly the Joy of our lives.

We can only thank God for the miracle of this little boy, who is affectionately known as “SQUEEKY”.

The number of prayers that are sent to heaven for this little boy have all been answered as the Dr’s said he would not walk…. He is running….he would not talk…..he is singing…..he would not learn….he knows….

He is running toward the lord…. he is now singing songs of praise…and he has learnt scriptures from the bible and can resite them when asked…

.

We still believe we will one day be blessed with another child. However it will not be our planning but that of the Lord.

Our love to you all for your Prayers, Support and Understanding hearts.

But most of all we can only Thank God for His miraculous Blessing over our lives for giving us all what we have already.

Remember: Like a rainbow, we are all drawn to this world by the colours we are given.

Be blessed.
Nola Ellis,
As seen thru a mothers eyes and shared thru a friends heart.


Copyright © 2005 N.Ellis. All Rights Reserved.


All posts will be personally answered.

Nola what a fantastic story! What a special blessing your little Samuel is and what a testimony he has already.

I know just how difficult it is for parents who have kids that have to undergo major operations... my son Zeke had heart surgery twice in his first 3 months.

Thanks for encouraging us all with your story

Nola,

Thank you so much for sharing your story with us. What an amazing little boy you have!

Wishing you, Michael, & Samual all the best.

Take care.

Nola tears came to my eyes as I read your story. What an amazing little man you have to have overcome some incredible obstacles. He truly is a blessing & a gift! You have done so well!

Nola what a very inspiring story. Thank you so much for sharing it with us. They say that God doesn't give us more than we can handle. I'm sure there have been times that you have questioned this however I think He did the right thing in bringing Samual to you. Samual is a very lucky boy to have such a wonderful mum.

I hope that you get your next wish of a healthy baby for you to love and care for.

Take care
Trish

Noala what a wonderful story thank you for sharing it.

Nola, a really beautiful story, thank-you so much for sharing it with us. your view on things is very close to my own, on lives that are meant to be with us, and Samuel is definately one of those.

I have worked with Adults and Children with chromosomal disabilities(fragile x and others ) in a support worker capacity, and vacation care worker and I have to say the majority of these children have exceeded expectations, and are absolutely amazing human beings.

I think is is devastating to have been told that you cannot have any more children and then to find out later on that this was incorrect. Many of the children I work with have totally "normal" brother and sisters.

It makes me sad to think of all those operations he has endured, but to have such a bright enduringly postive personality, you are right when you say what more parent could ask for ? all we ask for is our children are happy, what shape the package they come in isn't important!

Best of luck in conceiving a brother or sister for Samuel, I hope your family is blessed again!

Nola,
I read your story with tears in my eyes & believe that Michael & yourself were chosen for Samual.
You are all blessed to be given each other.
Best wishes!

amazing story Nola, thanks for sharing it!

i [-o< samual continues to astound and stick it to those "won't do" doctors

what a little legend!

Dear Nola;

When I read this the first time, I couldn't reply and had to leave my desk for a while with tears streaming down my face.

Firstly, I must say that you and Michael are definitely some of the best parents I could ever imagine.

Secondly, you have a wonderful son who will bring joy and laughter to many people, and hold a special place in many hearts.

Thirdly, I think you have so much courage and bravery in TTC, especially since you have been through so much pain with multiple m/c and the trauma involved with Samual's first few months of life.

I just think you are a wonderful person and I admire you SO much.

Off for another cry now.

Love

Thankyou for sharing your story Nola. What an amazing little boy you have there!

I'm sure that there is another little brother or sister for Samual just waiting for the perfect time to join your family!!

Nola, that is a beautiful story, thankyou so much for sharing it with us.

Samual sounds like the most delightful little boy, and how truly, truly amazing for him to have overcome all of those obstacles. What a little champion :D
And I truly admire you and your partner, you sound like the most wonderful parents ever!

Wishing you all the best with TTC, I am [-o< ing that soon you will have a little brother or sister for Samual.

Nola thankyou for telling us your story. Like all the others, I found myself with a huge lump in my throat.

I'm not a religous person, but I don't know what else to call Samual but a blessing. With everything that this little man has gone through in his first 5 years and he still smiles and enjoys life. I think maybe we could all look at Samual as an inspiration and follow in his foot steps.

I have found since Alana's diagnosis with CF, that we have had many people saying how lucky Alana is to have us as parents. I think you would agree, that we are the lucky ones. My life would not be the complete if I didn't have Alana.

I truelly admire your strength and courage.

I wish you all the luck with your TTC journey.

Wow Nola, thank you SO much for sharing your story with us. You and your husband are remarkable people, and sound like the most wonderful and caring parents.

Samual sounds like such a joy and he is delivering you with little miracles every day.

I hope that you get the 2nd child that you both so very much deserve.

Thank you all so much for your wonderful replies. I did say however that I would reply to each one of you and I will in the next couple of days.

Just wanted to update and let you know that Samual continues to amaze. He had his first full day at Kinder Tuesday and managed to get up in front of all the children (10 in total) and sing a solo of JESUS LOVE ME !!

The Teacher and all the mums had tears streaming down their eyes and i was just a mess. More so, SO PROUD of my Miracle baby.

Loving you all.

NOLA XX

Yay for Samual!!

Thats a huge thing to do, to get up in front of people and sing or talk. I have never been able to do that, even as an adult. I have found myself in tears from anxiety with the thought of doing that. You must be very proud!

Good on you Samual!

Nolla, your story really touched me, good people deserve good things, no wonder you were blessed with Samual.

I am so thrilled that he is achieving so much and doing so well, just goes to show not to believe everything the doctors tell you, but to be positive and have faith.

You must be so proud of your little boy :)

Dear Nola
I just read your beautiful tribute to Samual - wow miracles happen .
He is a legend and so inspiring.
I sensed from other posts he was a blessed child and from your name.
I can see he has given you love, laughter and much,much happiness.
Enjoy every minute of this special child.He sounds gorgeous.
I like the saying 'I'd rather have a moment of something wonderful than a lifetime of nothing special'.
You have been blessed with an opportunity to see miracles every day.
Samual was blessed you and Michael.
Good on Samual.
I believe in God's time you will get the precious bub you are trying for.I will [-o< for you every day.
I want you to know you are in my thoughts regarding current ttc especially.

Shannon, Firstly congrats on being mom, And yes Samual is really loving Kinder, we have just filled out all the paper work for next year. we have decided to have him repeat kinder as he is still really struggling to keep up with the other children.

He is doing really well at the moment. Thank you so much for thinking of us.

Nola, your story made me cry. I was so moved. He is truly a special child, and he was put on this earth for a reason. I pray that everything will be ok.
Simone, Xander and Declan xxxxx

dear nola,
Im a mother of a special child too. My only son is autisitic with no speech at all and he is already 8 yrs. old.He is a beautiful boy , very obedient and very affectionate. He has v. little academic skills but extremely independant.. Much as I would like him to interact with other kids ,and he wants to play with other children too but they avoid him since he has certain behavioural problems too. It does hurt me a lot when I see other children calling him names and making fun of him but he is so innocent he does not understand all this.. My heart just skips a beat when I think about his future .. I am helpless and depressed too. So dear nola, do not lose hope . We understand each others problems very well. We just have to put in our best and leave it to God to do the rest.

Nola this is the first time I've seen this too, and wanted to tell you how fortunate Samuel is to have wonderful, supportive, positive parents. I am Catholic and I too now believe every child is a gift from God. Samuel has more than proven this by bucking the odds and showing everyone what an amazing boy he is!

And now as a wonderful footnote, he's going to be an amazing big brother to boot!

Nola,

You know I think yourself & Michael are blessed to have Samual in your lives as he is to have been sent to you... He is going to be the best big brother anyone could ask for!!!!


Shreya, may I ask (if your still around) where do you live? My daughter (almost 8yrs) has an inbuilt Mummying/caring qulaity... In prep she started school & there is a girl with severe Cerebral Palsy in her grade & from day 1, maddison has assisted her in putting her bag & coat away, hooking her hat on her hook, after finishing her own school work Maddison asks if she can help this other girl.. I was a bit worried initially that Maddison wasnt letting this girl achieve on her own & may have actually been suffocating her a little. But I was advised by the teachers & this girls parents that it was muchly appreciated.. The little girl gets invited to all the other students birthdays she is well & truly part of the class & school & never left out! Maddison took her under her wing, Maddison is exceptionally confident & popular at the school, so this little girl has now got a broad range of friends. Maddison doesnt do as much for her now as she said she is starting to do most things by herself...

Just wondering whereabouts your located & maybe if there is a school/ or something nearby, where he could go to interact with kids that are a bit older & will interact with him???

Best wishes!!!!