Meet our team

NATHALIE RICHARD

Founder and Chief Executive Officer

Above all, I am the proud mother of a charming big boy named David. He has cerebral palsy, epilepsy, type 1 diabetes, intellectual disability, a severe digestive disorder (partially fed by an enternal feeding tube), severe language disorder, partially sighted and many other disorders resulting from cerebral palsy. Since my son’s birth, I have experienced many ordeals, which have made me grow. I went through a difficult divorce while my son was in a very bad state, as well as personal bankruptcy because I could not work due to David’s fragile health. After many surgeries and hospitalizations, I can now say that my son’s life is no longer in danger and that a certain routine has developed in our family’s favor.

In my past life (before David), I was studying for a BA in psychology at the Université du Québec à Montréal. At that time, I wanted to specialize with children who had experienced significant trauma. As the apple never falls far from the tree, it is not surprising for me to now realize that I now work directly with parents who have experienced trauma. I worked for several years as an administrative assistant for various companies which develped into one of my greatest strengths; my sense of organization. I have also developed a strong sense of resourcefulness, which is not to be underestimted when you find yourself in an unknown world strewn with obstacles!

I have a sincere desire to help parents living with a child with a disability. I wish simply to help to soften the pain, you are experiencing, by giving you some indispensable tools to better face the hardships that come when you have a special needs child. I firmly believe that a life full of happiness is possible after the announcement of disability and illness. We must give ourselves time, surround ourselves with the right people, and work hard and take one day at a time. The result will be well worth it, take it from a now happy mother!

Hope to meet you,

Nathalie

Amina Kalache

AMINA KALACHE

Assistant Director

My introduction to L’Étoile de Pacho has truly been professional love at first sight. It’s with the utmost humility that I am replacing Catherine Guérard as Assistant Director during her maternal leave.

I am a trained architect, with a certificate in Philanthropic Management from the University of Montreal as well of being a member of the AFP (Association of Fundraising Professionals) in Quebec. I have also assisted non profit organizations in human resources, financial and communications management for more than 12 years.

L’Étoile de Pacho’s mission is exceptional. It is the only organization in Quebec that offers support programs for parents with a polyhandicapped child by other parents of polyhandicapped children. It is a great priviledge to join the L’Étoile de Pacho team.

Amina

Danielle Snyder

DANIELLE SNYDER

I am a retiree who still has energy and wanted to give of my time to a cause, an organization that an old work colleague had just started. After having done many years of volonteer work and participating in big Étoile de Pacho events, I am now employed as the admistrative assistant to the director!

I am the one behind many emails, tax receipts and membership fees as well as all other related administrative tasks. Every manager has their right-hand man, well I’m the « left hand »… You have also seen me at the reception during fund raising events (I am really looking forward for all of us to finally see each other again). Thoses events allow me to put a face to a name of the different families that are members. During those events, the dynamic, the energy and the joy of living of the group are a source of wonder for me. YOU do me good!

You are beautiful encounters in my life and I hope that my contribution allows for the Étoile de Pacho mission to shine a little more each day!

Véronique Billette

VÉRONIQUE BILLETTE

Being an occupational therapist for clients with mental health issues for several years, I decided to put my career on hold to devote myself to my son, Adayel. Shortly after his premature birth in 2015, it was clear that many health challenges were ahead of us. Adayel was quickly diagnosed with cerebral palsy resulting from his untimely birth and difficult post-operative recovery from esophageal atresia. His first year of life was a process of grief, adjustment and finding access to resources.

It was therefore a relief when I met Nathalie of L’Étoile de Pacho, who guided me with access to resources and gave me the hope of finding a more balanced daily life. Also, participating in support groups was a breath of fresh air for me. These sessions allowed me to share with people who lived similar situations and to laugh at our unordinary daily lives.

Looking forward to laughing, exchanging and working with you!

Martine Chartrand

MARTINE CHARTRAND

Following a great career in hotel management, we finally managed to conceive our first child, thanks to insemination. After the 20-week ultrasound showing a few abnormal measurements, we ended up at the office of a geneticist at CHU Ste-Justine. After several tests, ultrasounds, MRI, amniocentesis, etc. they suspected that our little boy had Joubert syndrome. Confirmation of the syndrome came when Kayden was a week old. After more than 33 days in the neonatology department, Kayden has central apneas, a delay in overall development, a lack of tone, and dysphagia, not to mention them all.

Kayden is a wonderful little boy. He is always smiling and in a good mood. He is our sunshine. His development is progressing very well. He is a real fighter!

I believe that helping parents in the same situation makes a big difference. We felt very alone facing the diagnosis, but thanks to organizations like L’Étoile de Pacho, our solitude is now behind us. I wish to help other families go through the different stages that such a diagnosis can bring.

Geneviève Turcotte

GENEVIÈVE TURCOTTE

Since her birth, my daughter, Éloïse, has certainly been the center of my life. I’ve had to grieve getting a promotion, having a job, a condo, travelling etc, etc, etc… And, then the time came for me to purchase an adapted vehicle. Éloïse has the Coffin-Siris syndrome (SMARCB1). This condition comes with hypotonia, laryngomalacia, gastroparesis, lots of reflux, a severe scoliosis, epileptic seizures, a severe intellectual and motor disability and mostly, lots of question marks…

Regardless of all my diplomas, work expériences and multiple trips worldwide, I wasn’t at all prepared to become, aside from being a new mom, an occupational therapist, physiotherapist, speech therapist, nurse, administrator, secretary and more for my daughter. All of which, are unpaid jobs!

But, my daughter, with her natural strength is, couragious, a fighter and a little princess. She has taught me a lot more on myself than my previous life ever did. Through all the challenges, stress and scares that continue to haunt me, I’ve decided to offer myself more time, such as by being involved in this cause that has helped me and still does. It has given me the opportunity to work and therefore offer my knowledge and opinions as a member of a family that live particular challenges with a young girl who is particularly extraordinary.

FLORA KASYAN

FLORA KASYAN

I am the mother of a little girl born in 2016, named Alissa; living with an additional chromosome, the gene of love! Alissa’s diagnosis,Down syndrome, was announced two days after birth. Perfect pregnancy, follow-ups as usual, and boom! Alissa’s arrival changed everything; my lifestyle, my outlook on life. My daughter was the first child with Down’s syndrome I had ever seen in my life. It brought a lot of new challenges, new learning, but also a lot of love, patience and new friends that I would never have met otherwise.

Graphic designer, traveler, blogger and passionate about cooking, I had to put everything aside to make room for my daughter’s many appointments. Soon after maternity leave, I found myself alone, without work and without any income; until the day that Nathalie asked me to be part of the L’Étoile de Pacho team.

Today, I am a family caseworker. I share my knowledge with other families and learn a lot in return. I am now part of a new family that I meet almost every day of the week; the L’Étoile de Pacho family!

Anne Alexandre

ANNE ALEXANDRE

At thirteen years old, I started as a volunteer at Sainte-Justine’s Hospital in Montreal; I then graduated as a hygiene and pediatric nurse in Lausanne, Switzerland, became a special education teacher and then director of educational establishments of the EMSB and the CSDM: a busy career spanning over forty years.

Since I have spent the majority of my career with young boys and girls in Youth Centers, the last ten years have been a homecoming, as I was school director at Victor-Doré for ten years. Now retired, I choose to remain committed to a cause that I have come to know very intimately over the years. I bring and offer all my expertise, my empathy and my rigor to it.

I have always had the greatest admiration and respect for the parents of severely disabled children. As coordinator of L’Étoile de Pacho’s job introduction program, I am committed to listen, support and “make a difference”.

Fadwa Belaouch

FADWA BELAOUCH

Mother of 3 little treasures

My first baby, Adam, saw the light of day on a cold, snowy day. Oops, no he didn’t see anything, he was brought back to life after he stopped breathing for 19 minutes. Miracles do happen, but for him it was with many consequences: cerebral palsy, epilepsy, overall developmental delay and severe asthma until he died in May 2018.

In the hospital room where everyone came running when the monitor sounded the alarm, I began to mourn. I understood then that my life had changed forever. I saw my life spinning before me, my dreams fading and my dark future looming on the horizon. My fear had just emerged.

But reality was quite different, we had 7 ½ years of happiness with him, full of challenges and battles. He was a our little ray of sunshine. I will never forget his smile when I would walk into his bedroom in the morning, and it warms my heart every time I think about it.

I met with Nathalie Richard several times since the death of my son; she was always smiling and ready to listen to me. When I saw the notice for family caseworker position, I was very keen to apply, but I wondered if I was still considered a parent of a disabled child? Now I would say yes, it is something that marks us forever. I was provided with special learning opportunities thanks to Adam.

L’Étoile de Pacho helped me heal my wounds ; it allowed me to live again and do the only thing I do extremely well: help you as best as I can in defending the interests of your children.

Natalie Chiasson

NATALIE CHIASSON

Mom of 6 year old boy/girl twins, my life completely changed when my daughter was diagnosed with autism at only 20 months. It destroyed me and I quickly started grieving the « perfect » child. Then, less than a year later, my son was also diagnosed with autism, although he is much less severely affected than his sister, the news hit me like a dagger to my heart. I left my job to tend to my kids full time in their preschool years and be available to offer them all the support and therapy they needed. Zootherapy, musical therapy, intensive behavioural therapy (20hrs/week each for 1 year), early childhood stimulation program, adapted classes (gymnastics, swimming) and specialized camps. Nothing stopped us. Now, I can honestly say that I am completely at peace with their diagnosis and that I wouldn’t want them any other way.

Their journey also allowed me to meet a variety of professionals, as well as many parents in similar situations to whom I could relate to and them to me. Through time, by speaking with them, I’ve come to the realization that we, as parents of handicapped kids, are left mainly to fend for ourselves. Slowly, a flame ignited inside me to help fellow parents. I would picture myself in them and feel the urge to assist. Helping make their lives a little easier by listening to them as well as sharing my knowledge on programs, activities, organizations and services that are available to them and their kids made a world of difference to them and helping these parents would bring such joy to me. So, here I am! Having my Bachelors degree in Sexology, with a past career in sales, I am coming back to my roots of wanting to help others and L’Étoile de Pacho allows me to do just that by combining my inner counseling abilities with my experience at being a mom of handicapped kids. The perfect match!

Katherine Raymond

KATHERINE RAYMOND

Hello, my name is Katherine, but everyone calls me Kathou. I describe myself as a creative, passionate, enthusiastic and positive person. I am passionate about human beings (especially mini humans), their development fascinates me. I studied in early childhood and special care education and I love finding additional trainings to take on these subjects. I love reading on personal development and benevolent education.

I am a mom of 2 children, Lilybelle and Éloïk. My zebra*, Éloïk, is a unique child; he has a genetic variation of the CDH15 gene (3rd case reported worldwide) and a malformation of the mitochondria, which explains why 14% of his cells don’t respond properly or not at all to stimuli (only case worldwide). Éloïk is severely hypotonic, has dyspraxia and a global developmental delay. Éloïk is mostly a determined kid, persevering, smiling and proud; my little sunshine. Motivated by his sister who’s full of energy and compassion, Éloïk started walking when he was 3 ½ years old! He never ceases to surprise and amaze us. We are in what the professionals call the grey zone, which means that we have very little answers and no one can say what the future holds for us. We have often felt alone in the world and, sometimes even abandonned by doctors. Organizations like L’Étoile de Pacho brings us comfort and tremendous support. That’s what I want to do in life; offer support and comfort to families, share my knowledge and assist with the well-being of others. Guiding families to live the best life they can.

Looking forward to meeting with you!

*Term used to represent those who have been diagnosed with an orphan disease.

THANIA ALVAREZ

From my young age, I knew that I wanted a career in which I’d be helping others. Thanks to L’Étoile de Pacho, I have the opportunity to fulfill that dream. I have a bachelor’s degree in psychology and next year, I’ll be starting my master’s degree in social working.

I am a mom of 2 little boys : Gregory, a methodic and perseverant child with an exceptionally good memory and Aleksander, a very social and curious boy with an enormous desire to learn. Gregory has autism as well as a language disorder. The last 2 years have been quite the rollercoaster for our family, filled with lots of emotions and challenges.

Throughout that journey and all the challenges that we’ve faced, my son’s diagnosis has made me a better person. I’ve learned that there are small victories. A handicap is not a condemnation, it’s a different way of living, thinking, of being. My son shows me the beauty that lies in everyone, the undeniable value of the present moment and the small and simple pleasures of which I may not have noticed without him.

Looking forward to meeting with you!

NADIA REZGUI

NADIA REZGUI

Adam was born in August 2016, following a wonderful 36 weeks pregnancy. At birth, we had no indication leading us to believe that our great gift would be different. At 3 months, I started to notice a development gap compared to the norm. Gap that kept on increasing over time, and brought us to start analyzing and investigating alongside a very generous pediatrician from the Maisonneuve-Rosement hospital, who took the lead in this journey of ours.

In September 2017, 1 month after Adam’s first birthday, we got the diagnosis; deletion of the 9p24 chromosome. This genetic anomaly correlates with autism, an intellectual deficiency, an overall development delay, hypotonia, hyperlaxicity, heart abnormalities etc. It’s the story of this little piece of gene, that by its absence, opened the door to multiple battles and challenges, but also being amazed with every little successes.

Today, Adam is a charming, affectionate, happy and perseverant kid. I learned to respect his rythm and to accompany him in overtaking his obstacles. His playfulness, his curiosity and his desire to learn, bring both of us a tremendous amount of happiness.

After 4 years of having appointments 2 to 4 times per week with the Marie-Enfant Rehabilitation Center and the Center for Rehabilitation of Intellectual Disabilities, today, Adam goes to a school that supports us and collaborates wonderfully with our counselor. Confident that Adam’s well-being is assured for at school, I have decided to work while finishing my doctorate.

By working for L’Étoile de Pacho, I am fulfilling a dream that I’ve had for many years now. I finally have the opportunity to help, to the best of my abilities, families who are going through the same things as mine has. Thus, it is with tremendous joy that I join this wonderful team at L’Étoile de Pacho and its extraordinary families and members.

Noémi Marquis

NOÉMI MARQUIS

I am the mom of 2 kids, Macéo and Victor. Macéo has autism with an epileptic encephalopathy of type Lennox-Gastaut, a form of child epilepsy that is hard to treat and that is characterized by a psychomotor regression and frequent epileptic seizures. He has lost his use of language, has reverted to diapers since he turned 6 and has major limitations with his learning skills and movements. Regardless of treatments, the disease is very disabling. The mournings have followed one another, but we have managed to find a balance and serenity in this adversity.

Passionate of nature and outdoor activities, I believe in the strength of creativity and enthusiasm. A formed and qualified early childhood educator, I have worked with all age groups since 2010, with a particular interest in special needs kids. My role of guide and caregiver has been in the heart of my actions for all these years and has led me to my new professional life project of being an at home counselor for l’Étoile de Pacho. This is an organization that offers true balance between work and family, which has values of help and solidarity and a role that makes sense… That’s happiness at work !

Geneviève Arène

GENEVIÈVE ARÈNE

I am the mom of two amazingly different boys. Maverick who has Aspergers, ADHD, a developmental delay, motor dyspraxia, epileptic, hypotonic, hyperlax and has a muscle fatigue disorder which is still under investigation in genetics and in physiatry.

Phoenix, my youngest, has Tourette Syndrome, ADHD, an Obsessive-Compulsive Disorder with cognitive rigidity, anxiety disorder, intermittent explosive disorder, sensory modulation disorder, verbal dyspraxia and we recently found out that he also has a neurological disorder. I myself have ADHD. A heck of a cocktail, with numerous appointments and challenges, which brought me to leave my job in finance for an aeronautics company back in 2015.

My sons are multi-diagnostics and I am multidisciplinary. I have worked and studied in various and different fields: theatre, clown, plastic arts, comedian, early childhood education, finance and accounting, hairdressing, French composition and writing, and more!

My kids now each being in adapted classes, I have « a little » more time for me. I have restarted my studies in psychology at UQAM university this fall, with the goal to eventually help families with a handicapped child. A dream that I’ve had for many years now. Little did I know, my career project would come to life much quicker! L’Étoile de Pacho arrived in my life like magic, a destin sign showing me that I had made the right choice!

I am more than happy to join this wonderful team and hope to be able to bring my contribution to them for a long time to come!

Anna Sophia Zambrano

SOFIA ZAMBRANO

I am the proud mom of 2 loving kids! Matias, my ray of sunshine with an extra chromosome, Downs Syndrome, and my handsome Jéronimo. They are the center of my life, which took a 360 turn after Matias got his diagnosis. Even though I already had a close bond, full of love and learning experiences with my brother who has Cerebral Palsy, I was scared, thinking too much about the future and how to end the stigmatism and the way society would look at him in regards to his condition. I was upset and cried tears of happiness and sadness all at the same time.

Downs Syndrome didn’t have the same relevance to me after getting a diagnosis of infantile spasms, and it meant nothing when Matias was in critical condition, in intensive care as I was afraid of losing him. I didn’t want to lose my baby and I couldn’t imagine my life without my Matias, and without his extraordinary extra chromosome that brings us growth, gratefulness and brings and allows to value every moment of life.

This has brought me to follow my heart as a mom, sister and friend of people living with special needs, and transitioned my professional life, leaving behind my initial goal of why I immigrated to Quebec, to get my equivalence degree in Dental Medicine. I now want to be involved in this passion of defending rights, inclusion and improving the quality of life for handicapped children.

I am very happy and grateful to start this dream by working for L’Étoile de Pacho, and learn while offering my personal and professional experiences to help see this wonderful cause grow.

Thank you for welcoming me and I look forward to working with this beautiful family!

PASCALE STABILE

PASCALE STABILE

Adam was born, in October 2013, following a very normal pregnancy. During a routine exam, the maternity pedeatrician heard a heart murmur and quickly refered us to the Children’s Hospital. That’s when our lives shifted. At only 3 weeks old, we received his diagnosis of Cimeterre Syndrome, a very rare pathology of the malformation of the heart and lungs.

After having open heart surgery, my son spent his first few months in the hospital. His recovery was long, he spent many weeks in intensive care, and was on oxygen for a few years once he got to go back home. Now that his heart is repaired and his condition is considered stable, he no longer needs the oxygen, but still suffers from pulmonary hypertension and severe asthma.

Aside from worrying about his health, our day to day also juggles the challenges in regards to his other diagnoses, feet malformation, Autism Spectrum Disorder, ADHD, Dyspraxia and a Speech Disorder.

Nevertheless, Adam is an incredibly resiliant boy with tons of energy but above all, has a contagious joy of living.

I was working as a secretary in my past life, but had to abandon going back to work to be available for his numerous medical appointments and particular care. After being at home for the past 9 years, I felt the urge to do something else besides being « only » a mom. Having been a member of L’Étoile de Pacho for many years, I am now happy and proud to be part of this beautiful team, and to be able to contribute to the organization’s mission, thus helping other families like mine.

Guglielmo Perpetuini

GUGLIELMO PERPETUINI

I am a father to 2 young boys, Theo and Charles-Antonio. My wife was 25 weeks pregnant when Theo was born. Unfortunately, after 1 week of life, complications from his extreme prematurity took him from us. He is now a guardian angel to many of his cousins. A little less than a year later, born at 27 weeks, Charles-Antonio arrived. After 112 days of roller coaster emotions in intensive care, we got to come home. Those first few days back weren’t restful though. Charles-Antonio survived to several significant hemorrhages which unfortunately, caused brain dammage. He was 10 months old when we received his diagnosis of Cerebral Palsy. As I write this text, he is now 20 months old.

I am a physical education Teacher with a Master’s Degree in preschool/elementary school and special education teaching. I am currently a 4th grade teacher. Even before having my own kids, I had experience with hadicapped children, partly because of my internship while in school and the beginning of my professional career.

In my opinion, for cases such as perinatal bereavement, the birth of a premature baby or a handicapped child, services received have not always been satisfying. I have always wanted to help change things and I believe that associating myself with L’Étoile de Pacho as a Paternal Counselor is the best way to do this. It will be my pleasure to bring my exprience to help families, specifically dads, who are experiencing the birth of a premature child, a perinatal bereavement or the announcement of a diagnosis.

FRANCINE ACHO

FRANCINE ACHO

I am Michèle-Francine Acho, but Francine suits me better.

Who am I? Like you, I am a mom with beautiful challenges. I am, indeed, mom to 2 magnificiant and warrior kids. Sade who is 15 years old, has cerebral palsy, quadriparesis, dysphagia, epilepsy and with a moderate intellectual disability. Djimon is 9 with epilepsy, quadriparesis and moderate intellectual disability.

My children are my strength, my reason to ENJOY life. Why? When I think of my kids journey so far : Sade has survived twice, in addition to having a significant surgery back in April 2022, and Djimon has survived once. I remind myself that life is beautiful because I can ENJOY them and they give me a real purpose to my life.

Previously a high school teacher, then teaching adults and finally in the corporate world, and now, after being a stay at home mom for the past 4 years, I am slowly getting back into things as a Caregiver Recruiting Agent thanks to L’Étoile de Pacho. I am overjoyed and excited to help you, because this job, above and beyond the financial side of it, allows me to socialize even more but most of all, help you.

HAJAR LAITI

HAJAR LAITI

I am mom to two kids, Imrane 9 and Hafsa 12 years old.

Hafsa has a congenital malformation (Arachnoid cyst, agenesis of the corpus callosum) which caused a hydrocephalus, a psychomotor delay, an intellectual disability, strabismus, behavioral trouble (currently being evaluated for a possible ASD) and growth hormone deficiency.

The hardest part for me was the day and the week following when we got the results back from her first scan. Hafsa was 1 year old and needed to get a VP shunt installed; the ventriculoperitoneal diversion.

My family and I were lucky to cross paths with L’Étoile de Pacho after arriving in Quebec. We had just arrived in the country and didn’t know where to start or what to do. L’Étoile de Pacho were welcoming from the very first contact. Then the visit from our counselor, information provided on different resources available to those with a handicap, help with procedures, support, advice, follow-ups and the availability to answer our questions, have been a great help.

A helping hand when in need, an email, a phone call to make sure we are well, adapted services to parent’s reality with their overwhelming day to day with medical appointments, treatments etc.

Thanks to this wonderful organisation, I now find the courage to go back to work and join this beautiful team by helping families find caregivers for their kids.

Vanessa Allogo

VANESSA ALLOGO

Throughout my professional journey, I had the chance of supporting entrepreneurs and enterprises with their daily challenges, such as searching for new clients, suppliers, investors or their wish to go international. After seeing through those missions for more than 10 years, and being very sensitive to impact subjects (enviromental and/or societal), I wished for new professional goals to align with my new aspirations.

After meeting with a L’Étoile de Pacho member who spoke to me about the organization and their search for a philantropist to join their team, I went through their website and shed many tears (I must admit). I knew that I had to join this wonderful team with a truly inspiring and impactful mission. If my past experiences and my energy can provide a little respite to families in need, it’s with great pleasure and enthusiam that I will lift my sleeves.

I am also mom to my two cubs, Lucas 7 and Ysée 4, whom are my rays of sunshine.

Vanessa

MÉLANIE LAMBERT

I am the mom of two girls, Noémie and Laurence. Laurence was born in 2008 and has a rare desease (a mutation of her STXBP1 gene). She was only 3 days old when we noticed her first signs (seizures)… And the diagnosis came when she was 4 weeks old : West Syndrome (severe epilepsy between the ages of 0-5). Our polyhandicapped daughter brought us to a completely new world, that was until then, unknown to us. After many griefs and ups and downs, I can now say that, it is with great serenity that I navigate through these turbulent waters that come with living daily with a severely handicapped child.

When I saw the job offer posted by L’Étoile de Pacho, after 10 years of being at home caring for my family, I felt ready to conquer new challenges. I believe that my positivity and experience can greatly help other families that feel lost and deprived, or even in distress trying to face the tsunami of the beginnings : the diagnosis, the available resources, the paperwork and everything that comes with having a sick child. Becoming a counselor has been this natural way to give back to others.

Nahomie Guerrier

NAHOMIE GUERRIER

I am Nahomie Guerrier, blessed mom to 3 children, 2 of which have special needs. I’ve come to learn and better define special needs, 6 years ago when I gave birth to a baby with Down’s Syndrome. We often say that children are quite the obstacle course. However, that obstacle course became mine that day, and still is to this day. A road full of challenges, learning and acceptance.

Why engage with L’Étoile de Pacho? Because their mission speaks to me and promotes inclusion for not only kids, but also the parents, which are very often forgotten.

I am on the board of directors for J’me fais une place en garderie, an organization that supports inclusion for kids with a physical disability in daycares. As a counseling therapist, I also offer individual and couples therapy.

It is a priviledge for me to join this beautiful team!

SAMIA GHARIB

I am the mom to 2 wonderful boys. Adam-Yaya and Malick. It is during the morphological ultrasound, while pregnant with Adam-Yaya, that we discovered that he had a cardiac malformation. That’s when my whole life shifted. I knew this would involve surgery at birth, but I was clueless to knowing that it was linked to a complex syndrome. My son has CHARGE syndrome which consists of multiple congenital abnormalities, neurological and sensory deficits. Adam has had 3 open heart surgeries as well as a surgery for a cochlear implant. He has a bilateral profound deafness and is non verbal. He is also blind in one eye from having chorioretinal colobomas, has dysphagia and anxial hypotonia. All this results in severe developmental delays.

Anxiety and isolation had become my best allies, so learning to « live » again has been quite the journey. With all his diagnoses rolling down the red carpet, my Adam was ready to push through to live, as a real trooper, persevering with an unshakable strength. He is my little miracle. My feeling of powerlessness towards having a sick child is indescribable, but Adam-Yaya reminds me every day that there is hope, and brings me to discover a whole new extraordinary world amidst the many challenges and difficulties.

I really would have loved to have known of the existence of an organization such as L’Étoile de Pacho in the past. It’s therefore more than an honor for me to join this wonderful team, and a priviledge to help and support, to the best of my abilities, other families such as mine.

I look forward to meeting you!
Samia 

BECAUSE EVERY DOLLAR MAKES A DIFFERENCE