LIFESTORY AMBER + UPDATES
By Godelieve and Wim, very proud parents.
(Living in Belgium)
It was our greatest wish to have a second child and when several doctors told us that Progeria was not hereditary, we made our decision. Wim had his vasectomy reversed and then it was waiting and trying. However after two years still no result I had already given up courage and hope. Mentally and emotionally it was hard to see every month that there was no pregnancy. So I decided that I was very happy with Michiel and it was my faith to be a mother of one child. Wim would go to the surgeons in the autumn to get his vasectomy again. That decision was made and from then on I would concentrate on Michiel and no longer of a pregnancy.
We had a busy schedule in front of us. In May 2005 we went to the European reunion which was held in Turkey. We enjoyed the sun, sea and especially the company there; it was great to meet all the families and fellow-sufferers again in a natural environment so we spent pleasant days with each other. There is so much solidarity under the touched families in spite of the different languages and cultures.
How strange, my period stayed away. Could it be because I was very tired? Some days passed and then I got a little hope, could it be that I perhaps was pregnant? I bought a home pregnancy test and because I could not wait till home, I did the test at my work. The waiting lasted an eternity. I was waiting anxiously. The great moment was here; according to the test I was pregnant! It turned out to be positive. That was a load of my shoulders. Unbelievable! I looked again and yes, it was still positive. I looked several times till I believed it. I then immediately telephoned Wim and informed him he would be a daddy again. We were both very happy and filled with joy. Finally, I would be a mum again and Michiel could be a big brother. After work, I drove to the cemetery, to the grave of my parents, where I told my mum (who passed away in December 2004 and I was very close with her) that I was pregnant again and I have asked her to watch over me. It was dreadful that she could not experience this with me; she would have found this fantastic news for me.
I had firmly resolved to take it slowly; I would be very careful and cautious. I would hold the news to myself during a period of 3 months. However, the same evening, I telephoned my sister, Auntie Netteke who is the godmother of Michiel (his second mum) and we are very close, to tell her the news. She shouted with excitement and she was very happy for me because she knew how much I wanted to be a mum again, she had to promise me to tell nobody of my news until I was certain that everything went well. I was so glad that I could talk with her about this. I told her that I was happy and excited. I told her about my disbelief and my fear that something could go wrong. I could tell her all that I felt and that was great.
Some restless days followed: I hardly slept, was very frightened and ran constantly to the toilet because I thought I was bleeding. I had made an appointment with the doctor but I got the impression that those days lasted for ever. When he confirmed that I was indeed pregnant (blood test) I was relieved and believed it. It became reality although the fear stayed for some time.
In June 2005 we flew to America for the world reunion of Michiel and his fellow-sufferers. Although it was a relaxing time, I also was tired but I can’t do without this : the contacts with the parents, the laughs on the children’s faces when they are together and the strong bond of friendship between these children. Behind each child hides a specific tale and by this rare disease they have an exceptional bond for life.
Some days later, we told Michiel that he would become a big brother and he was so happy and excited, I knew that he could not keep this news quiet so we went to my mother in law. The whole family was there (Wim his brothers and sister and his mum and their families). We brought a little present from America for Michiel’s granny. Michiel asked everyone to be silent and to listen to a riddle. He gave the cuddle toy and said: “It is small, it must grow and we have brought it from America. What is it? You can all guess 3 times. One said a plant while the other said seed but nobody guessed it right of course. Then he said “A baby”. They asked: “Which baby?” Then he answered proudly: “The baby in mummy’s belly”. There was disbelief on all the faces but tears of joy when I told them that it was true. Then congratulations followed.
A week later we were invited by an organization called “Day by day” to go on an adventurous trip to Canada for 14 days. The doctor assured me that my pregnancy would not cause any problems and therefore I left in good faith to Canada. It was a very tiring travelling but oh so beautiful, it was unforgettable. It was a sight-seeing tour and we followed a busy schedule. I had been extra careful.
July 2005: Rosalie a fellow-sufferer of Michiel lives in Canada. By e-mail my sister Auntie Netteke stayed in touch with Rosalie and her parents and we told each other our novelties. Before we left, we emailed them to tell them were coming to Canada but we did not receive an answer. It just so happened that the granny of Rosalie had read in the Canadian newspaper that Michiel together with other sick children (cancer) was in town. She immediately telephoned her daughter and son-in-law to tell them about this news. Although they were on vacation they decided to return home. They came to the hotel to visit us, which was very special and exceptional. There was a translator who could translate between the two families. The day after we had a rest day so we decided to spent the day with Rosalie and her parents again. The parents of Rosalie had a hard time dealing with the news that their daughter had Progeria. They told us that they were very happy to have met us because through Michiel they have realized and seen that these children are happy children full with zest of life; joy and that they can live their own life without putting them in a porcelains cupboard. That was a beautiful compliment.
The last two days in Canada were less pleasant, I had light blood loss and I became a little worried. I did not want to go there to the doctor because I did not understand the language. I did not want to take the risk of being hospitalized in a strange hospital. I would wait because after two days we would return to Belgium. I had telephoned Auntie Netteke to make an appointment with my gynecologist. She also got worried and was glad that I returned. I did not know where the blood loss came from. Had I made a false movement? Was I too tired? Was there something wrong with the fetus? It occupied me those last two days.
Finally we arrived in Belgium. We directly went from the airport to the hospital where my gynecologist was waiting. A frightening moment followed. Then I heard the heartbeat of my baby and it was such a relief. I still was pregnant. Yippie! The gynecologist saw nothing wrong. He said that I was tired from the travels (America and Canada) and told me to take it easy. Wim went for Michiel and brought him into the room where he for the first time could see the baby on the screen. He came outside and told everyone he had seen his little brother (he wanted a brother). Everybody was relieved.
I wanted to know in advance if I would get a son or a daughter. For Michiel and Wim, I hoped for a boy. For myself, I secretly hoped for a little baby girl. One day when I went for my check-up, the gynecologist said he could see the sex of the child. Wim wanted it to be a surprise so he took Michiel outside and waited. There the gynecologist told me the great secret: a little baby girl! I was blissfully happy. I put my hand on my belly and told her that I was so happy with her and that I would take good care of her and that I already loved her with all my heart. Michiel entered the room and told me that he had heard that I would give birth to a little baby boy. He was sure about it.
Beside me there was only one person who could know the sex of the baby and that was my sister, Auntie Netteke. I immediately rang her on her mobile and told her my secret. We both were very excited, blissfully happy. Together we went for sugared almonds, birth announcements, baby cloths, etc. I further enjoyed a great pregnancy.
They have developed a prenatal test to examine if the fetus has Progeria but because doctors had told us the sickness was not hereditary, we decided to not do the test. We knew all the other families in the world and although there were families with more than one child, only one of them had Progeria. The possibility of having a child with Progeria is 1 in 8 million; a second possibility would be unique. By wonder I was pregnant and for myself this was a good sign, this baby was very welcome. They told us that the possibility of having a miscarriage after an amniocentesis was greater than having another child with Progeria. We were rest assured that our baby would be healthy.
The rest of my pregnancy went successfully. One told me each time that the size of this baby was better and higher than with Michiel. I didn’t have any more blood loss, I became rounder and was simply intense happy. With my treasure of a son who looked forward to the birth and with my little baby girl in my belly.
On 5 February 2006 our little baby girl was born. We called her “Amber” (symbol for the sunlight). She weighed 3,375 kilograms (7lb 6oz) at birth and measured 49 cm. Auntie Netteke, Daisy, Vera, Ruben, Niels, Yarne and the granny were waiting with Michiel in the hall. They were all nervous. Wim came for Michiel and told the others that the baby had been born and he took him to the labor room. There I told him that he had a little baby sister, Amber. When he saw her he blinked a tear away. He was very proud of his little sister. He always told everybody that he wanted to have a brother but he was very pleased with his little sister. On that very moment, I felt joy and happiness through my whole body. The most beautiful thing I could ever give Michiel (beside my heart and my love), is a playmate/friend for life. He went outside to tell everybody that he had a little sister, Amber. They were all crying with joy and happiness.
Auntie Netteke asked if she was healthy and the pediatrician told her to cry tears of joy because she was very healthy. Michiel’s granny was super content; she wanted to have a granddaughter. I and my daughter were drove into the room and Amber was so beautiful, so sweet. An angel. She was perfect. We drank champagne and were all very happy. The room was surrounded with love and happiness.
Amber has two godmothers. Vera, one of the two, is mother of 3 sons and wanted to have a little girl. Daisy (almost 16 years), the other godmother, preferred also a little baby girl. To her amazement, it turned out to be a little girl. An hour later she still cried of happiness.
We were all satisfied and intensely happy. Through a story in the newspaper the whole of Belgium knew that Michiel had become a big brother. At that moment there was no indication that our little girl had a dire fate.
I enjoyed every minute with Amber. Nothing or nobody can ever replace our dear and beloved Michiel but through her birth, I had hope and future perspectives. Dreams which are so obvious for others but which I do not have for Michiel. I saw Amber in my dreams already with long hair and pins. Going shopping with her when she becomes a teenager; starting going out with somebody, being in love, seeing her in a beautiful white wedding dress and the most special : I saw myself becoming a grandmother. All things for the far future but you live on cloud nine. I was a mother of two special treasures. I would look after them and love them with all the love I have in me. I was very grateful that I could have fulfilled Michiel’s dream: becoming a big brother.
Michiel developed himself indeed as a wonderful big brother. He was very protective of her and especially very sweet. He comforted her, gave her the bottle with milk, he gave her the dummy, etc. Meanwhile, we lived our life. We were so happy with our children. We got to hear from many people that Amber looked like Michiel. That was strange but they were brother and sister.
When Amber was three weeks old, she needed to be hospitalized. She had an infection on her airways. She didn’t eat properly and she had lost weight. To prevent dehydration, she needed an infusion for several days. When the pediatrician injected her, Wim saw the similarity with her veins as with Michiel’s. She then said that Amber and Michiel very much looked a like. Afterwards, she told us that on that particular moment she thought that Amber also suffered from Progeria but because we were so happy, she did not want to worry us.
Amber had a small blue vein on her forehead and it was then (she was 3 weeks old) that Wim proposed to do the Progeria test to exclude Progeria because with everything you see, you doubt. For myself, I was 100 % sure that she didn’t suffer from this rare disease. We asked our pediatrician to get in contact with Michiel’s doctor in Antwerp and ask her for the following procedure. Afterwards we heard that our pediatrician in that conversation had told about her suspicions. She had asked if it ever had happened that there were siblings suffering from the classical form Progeria (HGPS) and they denied that. Blood was taken and sent for tests. Three weeks later we had an appointment with Michiel’s doctor in Antwerp to get the result but in those three weeks I never once thought about the test because I was so sure that she didn’t have Progeria.
Meanwhile I was very busy with my preparations for the baby shower for Amber. We had decorated the room beautifully, there was plenty of drink and food and the party could start. A great party it was indeed on that Sunday, 19 March 2006. A very beautiful day with special memories, everybody was very happy for us. We look back on that day with grateful feelings.
Four days later we were expected in Antwerp. Some tests would happen with Michiel (control) and afterwards a conversation with our doctor. That day is etched in my memory. She stood there with tears in her eyes and told us she had to tell us something. Wim and I thought she had bad news from Michiel’s results from the tests. She told us that she didn’t know how to tell us the following news and that she found it awful but she had to tell it. Then it came: Amber also suffered from Progeria. I held my face with both hands telling her it could not be; it was not possible; the disease was not inherited. I cried, collapsed on my chair and shouted that it could not be. Michiel took my hands and said that it was not so bad because he also has Progeria and look how sweet he was. Amber would turn out to be sweet also. He of course did not understand our grief and pain because he doesn’t know about dying early. I only saw death, not once but twice. At once all my hopes, dreams and my future perspectives disappeared.
I heard Wim saying that it was not possible. It couldn’t be. The illness was not hereditary; the doctors had told us so. How was this possible? This never may happen not with us and not with anybody else. Nobody deserves such a fate. He asked if they were sure and they told us that they had done the test twice. They couldn’t believe it the first time so they have done it twice. It was confirmed that Michiel and Amber have the same DNA, an identical disorder at the same place in their DNA. It is heartbreaking to see it disappear all into nothing in one moment. It chills you to the bone. It cuts through you like a knife.
On the way home a deathly silence descended. In one minute I went from heaven to hell. Why us? Why was our luck taken away from us? Wim had led Auntie Netteke, Daisy, Vera and the granny with a trick to our home to tell them the heartbreaking news. Again, disbelief, anger and grief get upper hand and again you have to go through an emotional process, a crisscross of feelings.
We then first contacted Marjet, the chairman of the Progeria Family Circle to notify her of the news. She was shocked and full of disbelief. Wim then personally contacted the Belgian and Dutch families (fellow-sufferers). They were all astounded and shocked by the news just as the medical Progeria world. All the Dutch speaking families came together and we comforted each other and we spoke about it.
In one family, there were now two children with the traditional HGPS. This was world news. I didn’t care. The only thing I wanted was to be a mother to my two children and that was not granted to me. I was very angry at this disease. Our closest family members were informed carefully. We asked everyone to be silent about it. Once that this news got to the media, we would be swamped and we didn’t need that at that particular point.
However this silence did not last long. After exactly 10 days we received a telephone from the editor of a particular Belgian newspaper. He told us that they would publish the story about Amber. The editor was not amenable for reason. Wim told him to wait with this news because many family, acquaintances and friends didn’t know about her yet. It is not news that you want to tell the whole world. You needed to accept it yourself before telling it to someone else. He told the editor that I was an emotional wreck. The editor found his scoop more important than our privacy. The moment was not right to publish it already. Wim could not stop this action but told the editor that he would not give an interview and that people needed to let us rest.
Even though their information was correct, that particular newspaper has not treated us with the necessary respect. We have always tried to use the media informatively but now that newspaper wanted sensation concerning my both children and to know that, was very hard for us. I already was down hearted but it broke me down. I was afraid for the future.
As thought, after the appearance of Amber’s story in the newspaper, we were submerged with telephones, emails, etc. with the request to do our story for the camera but I didn’t need it. The news appeared in all newspapers, on television, etc. Like pronounced, it was world news. We didn’t cooperate on any of this but each day was something else. The newspaper told in their articles that they knew that Progeria was hereditary. Now we knew that as well. Because of Amber’s birth everyone knows that Progeria can be hereditary. The following week I didn’t answer the house phone; my family knew how to reach me on my mobile. The news about Amber having Progeria was so hard without all the media excitement around it. We went away for several days. Only few family members knew where we were.
Michiel, my dearest sweet treasure and caring brother for his little sister was a great support to me. He laughed to me, cuddled me, comforted me if I was sad and I knew that Amber needed me. She was so tiny and small. Both children, Michiel and Amber have rescued me from that dark place.
I wanted Amber to be baptised and that also has happened. That was also a very beautiful day. We had prepared a personal Mass and Michiel has read it well in Church and so proud that he was. Together, we all enjoyed it and we made a real children’s party of it. Our innocent beautiful girl in a white dress; memories come up and a smile appears on my face when I put this on paper.
I have told the medical Progeria world that they must find a treatment because I will not have that neither Michiel nor Amber die early. They are working on a treatment so I have a bit of hope and I hold on to it.
While I am writing Amber’s story down, our Michiel is 8 years old and our little Amber is 7 months old. The fact is that our children both are diagnosed with this rare disease and we know what their destiny holds but again we have repress that to the background enjoying each other and every day is our slogan and it only gets stronger.
I got encouraging pats on the back but there were also negative comments. People claimed that we knew that Progeria was hereditary and that we would still put such a child on the world while we knew that it would die early. For once and for all, I want to say to all those people that if I had known that there was a small chance of having a second child with Progeria, I wouldn’t have taken the risk because nobody puts a child on this world to let it die early.
It does not mean that Michiel and Amber are here now. They are both entitled to a happy childhood and my unconditional love as long as they are here. As long as I am here, I will take care for them, love them and appreciate them.
Everybody tells us that Michiel and Amber look a like. I can only hope that she will develop further such as Michiel has, a pleasant character, a social someone full of zest of life, spontaneous, curious, charming, etc.
If you look into her glittering and shining eyes, she reaches for you with her grabbing hands and when she gives you her dearest smile, you melt of love. Amber is so innocent, pure and playful but mostly she is real and she belongs to us.
Why we became the parents of two special children, we don’t know. According to Auntie Netteke, Amber has selected us, just as Michiel has, to be her parents, because we fulfill our task with Michiel so greatly. Amber instinctively had dictated to me not to do the prenatal Progeria test because we would welcome her with open arms and love. Also she wanted to let the medical Progeria world know that this rare sickness can be hereditary and to search in another direction.
Those words that Amber and Michiel have selected us as their parents, give me strength to go further.
Michiel and Amber have already given us both such happy moments and HOPE GIVES LIVE!
I want to conclude with a sentence for Michiel and Amber, when they are going to understand it all and they can read it. “Michiel and Amber, from the depth of our heart, we want you to know that we always will love you, forever and ever. We are very happy that you have selected us as your mammy and daddy. Michiel and Amber, we love you from here to heaven and back“.
Godelieve and Wim, your mummy and papa
P.S.: I have written those stories in the “I” form as their mother, but the whole text is related to the feelings of both of us, mother and father together.
February 2009 :
After a turbulent time in which Ambers disease appeared in the press, we intentional inserted a period of rest. That was necessary. I wanted to enjoy her thoroughly and I must say that I did : her first steps, her first words, her journey of discovery through life. I liked it very much that she had such a thick mop of hair. Something that Michiel never had. To comb her hair, to put hairclips in it : change her into a real little girl.
I was so proud of her, just as I am of Michiel. One day she came towards me and she had a tuft of hair in her hands. It fell out easily. Again, I went through a rough period of time. That moment, it felt as if a piece was taken from me. The external features of Progeria became quite clear. She was losing her luxuriant hair and I found that terrible. At this moment she almost lost it all. Also in the matter of weight and lenght we clearly notice the differences. I no longer can denie that my little girl suffers from Progeria, which I longtime thought was impossible.
In meantime our little girl became 3 years. She knows what she wants, she has a strong character. She is a real little rascal but one that touches everyones heart. She is very open, social, cheerful, a spunky precocious little girl. Since september she is going to kindergarten class. She loves everything that has to do with Dora and Hello Kitty. She likes splashing in the water.
I no longer work outside the door but stay at home for Michiel and Amber and everywhere I go, you see Amber. She is my little shadow. I can enjoy her so much. When she is playing in her playroom, I watch her secretly and then I am strucked by such an intense feeling of happiness. Amber as well as Michiel can really take my breath away.
I never thought that motherly love could be so overwhelming.
14 August 2010 :
The doctors of the Children’s Hospital in Boston are very satisfied at seeing our Amber and about the results of her tests during that week. She did really well. That gives us courage. Since her weight is 10 kilograms, they have increased her dose. She now must take 2 pills instead of 1 pill. They have tried to let her swallow the pills but they didn’t succeed. The parent has to do the content of the pills in solution but if it is only that !
Normally Michiel and Amber follow their treatment with Hayley but because of the European Meeting, organized by Hayley and her family, they got another point in time.
This week they followed the treatment with little Lindsay and her mum and dad, Kristy and Joe. The children stepped to each other and spontaneously started to play together. Our Michiel can speak English very well so he was the translator for his little sister Amber and little Lindsay. Also the parents immediately had a good conversation and they enjoyed the evening together. Lindsay was sad that she had to go to her room and sleep and had to take farewell of Michiel and Amber.
Our Amber is doing well. She grows well and is gaining weight. She now goes to the last kindergarten class. She likes to dresses up like a princess. She has received some beautiful dresses, especially handmade for her by Nadine. She is a fan of princesses and all of Hello Kitty. She is also a fan of K3 and is very happy to go and watch musicals (K3, Disney, etc.) in the theatre. Amber loves nail polish, lipstick and make-up, glitter and glamour. It’s a real girl and her favorite color is PINK of course. She has a mind of her own but is always full of laughter and good will. She loves her brother, to do what he does, and to tease him. Viewing movies (DVD’s) is also one of her favorites. How many times she has repeatedly seen a movie is incredible and when you are watching it closely with her, she always tell you what will happen and it is still correct. She has a good memory.
Although she and Michiel have the same disease, yet there is something otherwise with Amber. She suffers a lot from mosquito bites. She gets an allergic reaction towards this little spot and it always becomes a big red paved bump. Oh yeah, she can now swallow her medication independently without any need to be resolved so we are very proud of her.
Amber is still very good concerning her mobility and she is still playful, but yet, she is also only 5 years old. She receives twice a week physical therapy to keep her muscles flexible and we need to do exercises with her also. Since a while Amber is fascinated by horses / ponies (like her godmother, Daisy). Recently Daisy took her with her upon the horse. There appeared a twinkle in her eye, a smile on her lips and she was very proud.
Hereby an overview of some questions that are regularly asked about her:
- What is are your favorite color ? Pink
- Which activities / sports do you prefer ? Dancing and dressing up as a princess
- What do you love to eat ? Spaghetti and sweets or candy
- Which music do you prefer ? K3
- Have you got an idol (music) ? : Josje from K3
- Is going to pre-school kindergarten
Our Amber is doing very well. She’s in the first year (after instant school) and is very inquisitive and full of spirits. She got a result of 99.3 % at her first report. We are also very proud of her. She is still young but still has enough energy. Although she has hip complaints.
We notice that the disease with Michiel and Amber manifest different in some ways. Amber for example gets higly allergic reactions to a gnat bite which Michiel doesn’t have. If Michiel has been stung, he gets a small spot or a little bleb; with Amber it becomes a very large, hard and thick lump (swollen) caused by the gnat bite. She also gets allergic reactions by fake tattoos as well.
She loves glitter and glamour, (color) pink, make-up, musicals, high heels; shortly our Amber is a really girly-girl. With her youthful enthusiasm and playfulness she brings us regularly to laugh.
‘Amber’ means symbol for the sun and we can honestly say that she really is a SUNSHINEKID that brings great joy and pleasure in our lives.
We are just back from Boston and had very good news about Michiel and Amber. We didn’t receive any update about the cure, but all tests were very good. The MRI scan showed that their brains are still intact. They have no hidden brain attacks (nor Michiel nor Amber). They were very positive about the overall condition of them both.
We also asked them if they could do anything to help Amber with her hips. She has a lot more problems with her hips then Michiel. We know what this can cause in the future. But there is no cure or anything to prevent this.
We wish you a Merry Christmas and a Happy New Year !
Our Amber got her ear pierced today and earrings (at her request). She was a strong little girl. She didn’t cried so I am very proud of her.
After months of preparation, the day was finally there : Amber’s First Communion.
A wonderful day. A beautiful familyparty.
28 June-5 July 2013:
‘Villa Pardoes’ is a comfortable accommodation in Kaatsheuvel (The Netherlands) especially for children with a life-threatening illness. Together with parents, brothers and sisters they enjoy in Villa Pardoes a free holiday in one of the eight themed houses, like Snow White, Barbie, The Beach, 1001 Night, Circus, Safari, The Knight and Space. The residence has whirlpools, a large fireplace, go-karts, game consoles and a sandbox with a slide; a stay to make everything as fun as possible.
The shape of the Villa Pardoes building – a snail – says a lot about the special nature of this holiday. The entrance, complete with a rock of pictures, leads visitors through a snail trail to the heart of Villa Pardoes. Inside, everything is based on the wishes of the children. So, along with their family, they can enjoy a week’s holiday, where the disease is just temporarily displaced into the background. With right you can say the vacation of a lifetime …
It was Toon’s wish spending a week at Villa Pardoes together with his fellow-sufferers, Amber, Mats and Bjorn. Aunt Netteke has put her shoulder to the wheel and made sure that all files were sent jointly together with her letter of motivation.
The idea was already shifted a bit into the background. Great was our surprise when we received (almost three months later) the Approval of the Medical Commission of Villa Pardoes. All applications were positif approved and by exception, the children got the chance to spend this week all together.
They all agreed for the period to stay there : from June 28 to July 5, 2013. Unfortunately for our Mats who was unable to attend due to annual leave during this period but is going to stay there at another period. Imagine: the amusement park ‘The Efteling’ in your backyard. Great anyway!
The kids were all very excited about their own fairy tale apartment in Villa Pardoes as well as they could go everyday to the land of the elves, fairies, princesses and roller coasters.
I’m still afterglowing these super days at Villa Pardoes. It was beautiful to see how Amber, Michiel, Bjorn, Toon (sisters, brothers, nieces) all enjoyed the beauty that this villa has to offer. This week was marked by carefree enjoyment and they all whole-heartedly did.
We have also had the opportunity to get to know other families and there were from the beginning good vibes between the Belgians and Wynand, Sindy, Lars and Jurre (a darling boy you saw enjoying his electrical scooter), Pascal, Sandra, Lars, Ralf and Stan. Together we talked a lot and laughed daily.
I would like to give a big compliment to the management, the entire staff and their daily commitment to all families with a sick child and also to all its volunteers. Massive Thanks!
The beautiful memories of this special week and the wonderful pictures will be bundled and cherished and every time I think about it or watch it, it will be with some sadness, but also with a beatific blissful smile and gratefulness.
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