MEET OUR TEAM
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,
One fine day in August 2018, while I was painting the bathroom of the organization’s new premises, our dear Nathalie Richard, her head full of projects and a smile on her face, made me an unexpected proposal: to join the L’Étoile de Pacho team and become her Assistant Director. I don’t think she had completed her sentence before I responded with a huge YES. As I worked in the field of people with disabilities for more than 6 years, I had the opportunity of seeing the birth of the organization and above all, to see it take off in a spectacular and deserving fashion, thanks to the tireless efforts of the entire team of employees, volunteers and parents. I realized the need for such an organization and knew the undeniable role it would play with the families it supported. Therefore, it was without hesitation that I wanted to join the team so that I too could contribute to the well-being of parents with disabled children.
Although I do not have a disabled child, I am not even a mom, you still did me the honor of welcoming me into your big beautiful family! This is why I am committed to all of you to join your voices to defend your rights and improve the quality of life, programs and services to children with disabilities and their families.
ANOUK LANOUETTE TURGEON
Anouk has been a receptionist, writer, translator, subtitler for the hearing impaired, teacher (French as second language), assistant cook in the boondocks by the sea, volunteer community journalist, mentor for young dropouts, and employment counselor for newcomers. She is now responsible for pairing at ALPA (Acceuil et liaison pour arrivants – Welcome and liaison for newcomers)
On the family front, Anouk has two very special children: Éli-the-magnificant, born in 2011, suffering from Down’s syndrome, model and actor; and Lhassa-the-enigmatic, multi-disabled beauty, who was born in 2014 with two extremely rare genetic mutations and who has the most beautiful smile in human history.
Anouk is co-responsible for Parents jusqu’au bout, which obtained the creation of the SEHNSE (Supplément pour enfant handicapé nécessitant des soins exceptionnels – Supplement for handicapped children in need of exceptional care) in June 2016. She is delighted to be part of the L’Étoile de Pacho team, which she says does fundamental work with concerned families. In addition, she has a writing project that she is working on at night. In short, she leads at least three lives at a time: caseworker, wanna-be-writer and, first and foremost, that of a mom. The three lives support and nourish each other…when they don’t step on each others’ toes on the agenda.
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!
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.
Eloïse my little daughter, has certainly been the center of my life since birth. I had to leave a job, a promotion, a condo, etc., and buy an adapted vehicle. I have spent half her life in the hospital at her side. Eloïse is afflicted with the Coffin-Siris syndrome which comes with a hypotonia, a severe scoliosis in her case and global mental delay. She does not speak, does not eat through the mouth and does not walk. Despite all my diplomas (BBA and certificate), my work experiences and my many trips around the world, I was not at all prepared to become, in addition to a new mom, an occupational therapist, a physiotherapist, a speech therapist , a nurse, a manager, a secretary, etc., for my daughter. And all these new jobs are unpaid!
However my daughter, who is a force of nature, courageous, a fighter, and certainly a little princess, helps me learn more about myself every day than ever before. In spite of all the challenges, stress and fears that have plagued me, I have decided to get involved for this cause that has helped me and is still doing so. I offer my knowledge and opinions as a member of a family who is facing special challenges with a particularly extraordinary girl.
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!
In 2015, my beautiful son Théo was born, a six-week premature baby. There was no indication of a problem at birth, but it was on the eve of his first birthday that he was diagnosed with cerebral palsy of the spastic diplegia type. This announcement had the effect of a bomb on us: Théo had a mobility impairment and they could not predict how this paralysis would affect his development. After 2 very difficult years where tears were omnipresent almost daily, we can say that the worst is behind us, despite the many challenges ahead of us. Théo is a charming little boy, brilliant, who loves music and that fills us with happiness!
L’Étoile de Pacho was a lifeline to me when I was lost, helpless and needed to be heard. Working as an actress-singer, I find that my involvement in this organization gives meaning and a new balance in my life. Therefore, it is with great pleasure that I join the team in order to contribute to this cause that is dear to my heart!
ARIANE GALARNEAU GRAVEL
I am the proud mother of Maik, a big boy full of magnificent smiles and bursts of laughters. In spite of his severe intellectual disability, his epilepsy, his gastric reflux problems, his hypotonia and scoliosis, providing his nutrition by feeding tube , his complete dependence on adults, Maik shows us perseverance, the joy of living and the well-being of the present moment.
Originally a leisure technician with a variety of customers, I quickly fell under the charm of a clientele consisting of children with multiple disabilities. I worked for the shelter unit of the Marie-Enfant rehabilitation center for a few years before having my own « different child ».
Maik’s early years were very trying. Much has happened since and life became more viable, more pleasant. Therefore I was able to go back to school and graduate as a special education teacher.
The desire to help people in need is an integral part of me. I was born to help. Already at Marie-Enfant, I organized family activities designed to reach out to parents. During Maik’s dark years, I suffered so much from loneliness and misunderstanding that I vowed to reach out to every family like mine who would cross my path. Now, I’m happy to see the relationships built between us all, parents of children with special needs, thanks to L’Étoile de Pacho. It is with great pleasure that I share my personal and professional experiences with the families of L’Étoile de Pacho!
A committed manager, a passionate marketing professional and the mother of a beautiful grown-up daughter, there was no indication that my life would be turned upside down when my second child was born. Against all expectations, my little Edouard was born with a very rare genetic mutation for which there is very little documentation today, and no cure. L’Étoile de Pacho accompanied my family with kindness and empathy in the process of accepting the diagnosis of our little hero on four wheels.
Now that my child’s health is fairly stable, I want to contribute to the development and expansion of an organization that makes a real difference to families like mine. It is through the management of various special projects within l’Étoile de Pacho that I put my personal and professional background to work with the sole objective of advancing the cause of children with special needs.
I strongly believe that by joining forces we can make a difference.
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 ».
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.
Communications professional, I am the mother of 3 wonderful boys. A healthy elder and twins with a genetic disorder, X-Fragile Syndrome. The arrival of the twins was like a bomb in our lives. There was nothing to suggest that these two boys were carrying something that would change our lives…
The diagnosis was made when they were almost 20 months old. Our lives were filled with months of worries, doubts, questioning and many, many tears. For a long time we believed that the “twins” factor explained the difficulties we were encounting… but the reality was quite different!
After the shock, the sadness and a roller coaster of emotions, I can now say that I feel at peace with all this. But like many mothers of children with special needs, I had to put my professional aspirations aside to make my way through this sometimes twisted, sometimes abstract but certainly never simple system.
I joined the team of L’Étoile de Pacho with great joy in order to humbly scatter seeds of mutual aid amongst families who, like mine, have to overcome daily challenges, large and small. I sincerely believe in the strength in numbers and I am convinced that my presence on the team will be one that is most rewarding for me.
I’m the mother of Marion, a 16-year-old girl suffering from congenital ataxia and epilepsy. We migrated from France a year ago with my partner Romuald and his daughter Rachel. It was the desire to rebuild a professional and family life together that led us to Montreal.
I was a French teacher in France for twenty years. My professional life was affected following the announcement of Marion’s disability and need for special care. Then, in 2007, the death of her father was the trigger for a big reflection on my professional life: I wanted to have a profession where I would blossom and that would allow me to be available for my daughter.
I discovered an unexpected inner strength in managing grief, literally and figuratively. An exceptional child requires extraordinary education. I also faced obstacles linked to the administrative process which is overwhelming in France as well, with their fair share of injustices and absurdities.
I have always tried to create relationships with the parents of the students where Marion went to school. I am currently in training to obtain my SSVD as secretary, I will then specialize as a medical secretary.
I am pleased to join the great family of L’Étoile de Pacho in order to use my skills as an extraordinary mother and a secretary who listens. Thank you for welcoming me so warmly! This is one more step towards my integration into your Belle Province!
Before my son was born, I was an assistant buyer for a clothing retailer. I put my career aside to take care of his development as much as possible. Aside from the great joys of becoming mother to my beloved Olivier, there were multiple diagnoses: Beckwith-Wiedemann syndrome, cerebral palsy, hypotonia of the trunk, strabismus, obstructive sleep apnea, dysarthria and other associated conditions. My second life began then.
My son is a very cheerful boy who participates very well in therapy. His strength helped me to cope with everything I was going through. It did me good when I started talking to other families like mine. I felt understood and developed a sense of belonging with other parents.
Today it is an honor to be part of L’Étoile de Pacho’s team. I will share my knowledge with you, extraordinary families. I am convinced that you will teach me a lot.
Hello, I am Annie Potier, new family caseworker at L’Étoile de Pacho. I have been asked to reveal myself to you so that we can get to know each other. Where do I start? Let’s start with what is most dear to me. I am the single mother of a wonderful 7 year old boy, Collin, who has cerebral palsy, double spastic hemiplegia, severe verbal dyspraxia and severe dysphasia. I love my child and I would give him the moon if he needed it to be happy. This little bundle of love and joy changed my life. Thank you Collin!
My professional career has always fascinated me. As I always joke, I fell into community life when I was little, like Obelix in the magic potion pot. From an early age, I volunteered and never stopped. I have worked in the community for more than 25 years as an animator, general manager, organizer of events but above all as a caseworker with several clienteles. I love contact with people, helping people. For me, helping and giving to others means being helped and receiving too. For several years now, I have been a special education teacher for children in difficulty in primary schools and this role has made me grow and love LIFE even more.
I am now part of L’Étoile de Pacho’s team. I deeply believe in the organization and its mission and will do everything to help families. My heart, my soul, my smile, my professionalism and my experience will be completely invested in this very important cause. When I reached out to L’Étoile de Pacho for my personal needs; they helped me a lot and still do … I will do everything to return all this support, the limitless acceptance and the love that I received from them.
I am really happy and blessed to work with you. Thank you for welcoming me.
As a special education teacher, I am pleased to join L’Étoile de Pacho’s team. Having an older brother living with Down’s syndrome, I grew up in a world where intellectual disabilities was part of everyday life. To me, these endearing human beings are no different. They are models of perseverance with a contagious joie de vivre.
For several years, I worked with children, adolescents and adults with intellectual and/or motor disabilities. During the past few years, I particularly worked in schools and youth centers with children having various difficulties. I quickly realized that families often need help and they have difficulty finding or receiving it. L’Étoile de Pacho crossed my path just as I wanted to start working with families.
It is therefore with great enthusiasm that I join this great team.