CPN | Faces of the Network

Faces of the Network

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Kai

Diagnosis: Brain Tumor - Optic Glioma

Bio: Kai was diagnosed with an inoperable brain tumor at 8 months old. During his 16 moths of chemotherapy treatments we were also supported by early intervention and home based palliative care. He died just after his second birthday in 2012.

Last updated 12/13/2019

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Courageous Parents Network

Jake Swoyer

Diagnosis: Dravet Syndrome and Mitochondrial Disease

Bio:

Last updated 11/13/2019

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Cameron Lord

Diagnosis: Tay-Sachs

Bio: Her name is Cameron. We called her Nugget. She was diagnosed at age 6 months and died right after her 2nd birthday in 2001. Tay-Sachs was a fatal diagnosis in 1999 and in the absence of any possible treatments, our only course of care was palliative care. And it made all of the difference. Cameron's first cousin, Hayden Lord, also had infantile Tay-Sachs. We have two other children, now 22 and 18.

Last updated 12/11/2019

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Courageous Parents Network

Ian Alexander Scher

Diagnosis: PCH1A

Bio:

Last updated 2/1/2019

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The Murray's

Diagnosis: Intrauterine bilateral stroke. Spastic Quad CO, Cortcally Blind

Bio: My son was 15 when he passed away in September of 2018. He suffered a severe bilateral intrauterine stroke. After years of suggested interventions by the medical world, we were finally introduced to Palliative Care. I wish someone would have told us about it the day he was born, because it has been the best thing for him and for our family.

Last updated 12/15/2019

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The Hinmans

Diagnosis: Two children with Juvenile Tay Sachs

Bio: We are the Hinmans. Mom (Crystal) and Dad (DeForest). We have 3 children ages 10, 8, and 5. After searching for a diagnosis to mystery neurological issues for my 8 and 5 year old we now have confirmed its juvenile Tay Sachs. They are a boy (Moses, 5) and a girl (Beatrix,8). Just looking to speak with anyone who has been through something like this. And advice on how to support our 10 old unaffected daughter. We have a great medical team assembled and family and friend support network. We would like to talk to other families who have done and are doing this though.

Last updated 1/23/2019

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Potter Family

Diagnosis: Leighs syndrome

Bio: Owen is 13 months old. Started regression at 10 months. He could talk, say Momma & Dadda. He could crawl, sit up, stand up, was taking steps. Within 1 weeks time he regressed. We took him to Children's hospital in Omaha, Ne. They a ct scan where it was found he had lesions on his basal ganglia and his brain stem. He was diagnosed with Leighs syndrome, we had to do a DNA test to confirm this. He was put on ng tube feeds as he failed his swallow test. A few weeks after his 1st week long stay. We were back in the ER. Owen

Last updated 1/23/2019

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Noemi

Diagnosis: Retts Syndrome

Bio: Noemi was born October 4 in 2016. When she was only eight weeks old she was diagnosed with epilepsy and the doctors did a lot of tests to find out why she had these seizures. For almost a year we had the hope that she would grow out of it and then everything will be alright. But then we got her diagnosis. CDKL5 is a gene which is responsible for proper brain development, so as hers is defected she probably will never walk, talk or feed herself. Seizures will always be a part of her life as they are very hard to control. Noemi is such a beautiful girl. She

Last updated 7/25/2019

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Ben Siedman

Diagnosis: Sanfilippo Syndrome (MPS III)

Bio:

Last updated 11/26/2019

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Rex Timko and Family

Diagnosis: Late Infantile Batten Disease

Bio:

Last updated 1/23/2019

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Claire and fam

Diagnosis: CP, epilepsy, blind/deaf, mitochondrial disease

Bio:

Last updated 1/29/2019

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The Blake Family

Diagnosis:

Bio:

Last updated 1/23/2019

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Cora O'Sullivan

Diagnosis: Zellweger Syndrome

Bio: My husband and I are first time parents, however we have struggled with recurrent pregnancy loss over the past few years. Cora Finley was born our much anticipated rainbow baby on December 9, 2018. She had a very difficult birth followed by a two-week NICU stay, during which we learned of her very rare genetic diagnosis. We are heartbroken for the poor prognosis and life expectancy of our beautiful daughter, and grieving the loss of the life we were planning and wishing for, but above all of that we are absolutely in love with our baby girl and want to give her the best life we can.

Last updated 1/23/2019

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Talia Duff

Diagnosis: Charcot Marie Tooth type 4J (CMT4J)

Bio:

Last updated 11/26/2019

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Afaaf Ayesha

Diagnosis:

Bio: I'm a mother of 2 years old daughter named Afaaf. She was born on 17th January 2017. She was gradually losing all her abilities and started having fits that were increasing day by day. Meanwhile we were taking her to different doctors , and finally she was recently diagnosed with taysachs . She's having recurrent pneumonia and almost paralysed. Now she is on NG feed. Farhat Fatima From Pakistan.

Last updated 2/2/2019

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Yermando solis

Diagnosis: Rhyabdsaracoma cancer

Bio: Yermando will be 8 on February 5. He was sent to Omaha Nebraska after they he had a lump on his forearm for quite some time and then started complaining. When his pediatrician said it was just a bruise when we took him to a dr a year later it was rybdosarcoma cancer. He underwent ultrasound, blood, mri, ct scan. Then we were told that it was sarcoma cancer. We went to a specialist in Omaha at UNMC and he told us he was sure it was benign tumor. It was removed and biopsies. The results came back a few days later and we were asked to come to the

Last updated 1/26/2019

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Trevor Cusack

Diagnosis: worked with Undiagnosed Diseases program. no answers

Bio: My very healthy, bright and talented son started to fail at age 15 with no explanation. He died 10 years later after failing little by little over the years - a neurological progression. They were never able to diagnose his illness. I have written volumes about our experience but will keep this short. I can speak to having no answers, to grief, to the value of palliative care practitioners, and to the kindnesses of both friends and strangers. My niece, Kelly Duda, suggested this site. She is a friend of Blyth.

Last updated 1/29/2019

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Kellan

Diagnosis: Undiagnosed

Bio: Kellan was fearless, one of a kind, dinosaur loving little boy. He fought every day through pain and found ways to smile and laugh through all of his hurt. He lived with great big joy, that I miss desperately each minute but that I am determined to share as his legacy.

Last updated 3/18/2019

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Courageous Parents Network

Roman

Diagnosis: Undiagnosed

Bio: Roman suffered severe HIE at birth which has lead to GMFS level 5 Cerebral Palsy, Lennox-Gaustaut syndrome (epilepsy), a hearing and vision impairment, and chronic restrictive lung disease. His lung function has been declining and we changed our focus to comfort measures and hospice in January 2019. He has a big brother who loves him, a spunky cat who chases his oxygen cords, and a love of music.

Last updated 12/11/2019

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Holman Day Gawler

Diagnosis:

Bio: Holman was our first son, and he was born and died on the same day, November 30, 2015. He had a life of 42 weeks in my belly. Now he is our angel baby, and we have another son, his little brother, and our rainbow baby.

Last updated 2/1/2019

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Courageous Parents Network

Maren Stecken

Diagnosis: Propionic Acidemia

Bio: Maren is almost 7 and she and another baby are the surviving children in the state of Colorado with her condition.

Last updated 2/3/2019

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Jaxom & Denver Mason

Diagnosis: Batten Disease

Bio: These are my two sons Jaxom & Denver. They were diagnosed with Batten Disease CLN2 (atypical) in 2016. Jaxom is 31 years old and Denver is 28. We live in Halifax, Nova Scotia, Canada.

Last updated 2/11/2019

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Jacqueline Graham

Diagnosis: Sanfilippo Syndrome (MPS III)

Bio: Jacqueline is 23 years old. She loved to run on the beach and ride her horse. Pets are very important in her life. Her dogs and cats stay by herside even when she chased them.

Last updated 2/12/2019

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Tyson

Diagnosis: Wolf-Hirschhorn Syndrome

Bio: My son Tyson just turned 1 on February 21st. He has a rare 1 in 50,0000 condition called Wolf-Hirschhorn Syndrome. With this disease comes epilepsy, characteristic facial features, severe developmental delay, low muscle tone, cleft-palate, heart defects, feeding difficulties, and extremely slow growth. 2/3 diagnosed do not live to see their third birthday.

Last updated 3/7/2019

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Jerimya Leasure

Diagnosis: Brain Tumor

Bio: My daughter Jerimya was diagnosed with a pilocytic astrocytoma with anaplastic features in March of 2017. This is a type of brain tumor but she had it in her spinal cord. She had surgery to remove it and followed up with 10 rounds chemotherapy that lasted 1 1/2 years. She had to be rehabilitate to be able to sit up, stand and walk again. We finished chemo in August 2018 and had her port removed and we still do occupational and physical therapy currently. She is now 6 and enjoys attending kindergarten with her friends.

Last updated 3/23/2019

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Brianna

Diagnosis: Hydranencephaly

Bio: Brianna was diagnosed with Hydranencephaly at 6 months old and has a prognosis of 1 year which she has lived way passed that and will be celebrating her 19th birthday this year. She lives at home with us. She has a sister who is almost 2 years old. We have a busy household that is filled with life and love and always do what it takes to end each night at peace with our day.

Last updated 8/8/2019

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Damon Mendez

Diagnosis:

Bio: Damon had always been a healthy fun loving active little boy. Always dancing, very playful, and very curious. His giggles echoed throughout the house all day long. He was only 2yrs old, right as he was beggining to explore and really develop his own unique personality when he was diagnosed with an aggressive form of brain cancer..gr4 Medulloblastoma which had already spread down his entire spine! He has endured so much since then including 2 brain surgeries, high doses of chemotherapy with stem cell transplants, & 30 rounds of radiation. Today he is in remission and thriving!

Last updated 4/23/2019

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Quinlan

Diagnosis: Brat-1 mutation

Bio: Quinlan was our sweet, first born son who never spoke a word, yet taught us more than anyone else ever will. He was diagnosed with a mutation of the Brat-1 gene at 14 months old. He spent about a year of his life in patient between Boston Children’s Hospital and Fransiscan Children’s Hospital with a trach, feeding tube, epilepsy, microcephalys, and global developmental delays. He ultimately was able to come home and be with us until his passing in January 2017 when he was two and a half years old.

Last updated 6/13/2019

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Courageous Parents Network

Anonymous

Diagnosis: Undiagnosed

Bio:

Last updated 7/9/2019

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Joseph Teagan Cords

Diagnosis: Brain Tumor

Bio: Joseph was diagnosed with Medulloblastoma subtype 3 at the age of 6 and had undergone a craniotomy, radiation and Chemotherapy. He spent about 8 months undergoing treatment with the never giving up attitude, smile on his face and his compassion to other children in the hospital. He had 18 months of clean MRI'S and we were about to start Growth Hormone therapy when his MRI on March 12th came back with devastating news. His Tumors came back along with several in his spine. Joseph decided he wanted to live life with what time he had left and we did.

Last updated 8/23/2019

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JULIO C ALMARAZ JR

Diagnosis: Hunter Syndrome (MPS II)

Bio: my son was diagnosed with hunter syndrome at the age of 5 recently he has declined a lot we are at a moment that we are grieving our child who is still alive and we feel helpless.

Last updated 7/18/2019

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Morgan

Diagnosis: Traumatic brain injury

Bio: My 20 year old daughter fell last August from her skateboard. No helmet. Suffered skull fracture 6 inches eear trouble carotid artery split. Balance issues. Memory issues feeling as if life is over. I suffer fibromyalgia peripheral neuropathy back and neck surgeries needed cancer survivor still much going on there. Lots of things to learn about and help us to work through.

Last updated 7/20/2019

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Courageous Parents Network

GBMTeamWyatt

Diagnosis: Brain Tumor

Bio: The hardest journey we've ever faced, with the best teammates ever!

Last updated 10/19/2019

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Hudson Caswell

Diagnosis: Premature Chronic Lungs (BPD)

Bio: Hudson Cooper Caswell, or as we like to call him, "Huddy" was born at 24 weeks 5 days on December 6, 2017. He had a really rough NICU journey that included chronic lung disease (BPD) and having to have a trach. We always hoped and prayed we would get to take him home with us. We knew we had a long road so we tried to make the best of every moment. Hudson became really sick and passed away April 17, 2019. Our hearts are forever broken, but we hope to use Hudson's story to change lives.

Last updated 7/31/2019

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Kirk Family

Diagnosis:

Bio: I am the momma to a sweet smiley 4 year old who suffers from an extensive list of diagnosis due to a traumatic brain injury. Jordan lives at home with his dad and I and 5 older brothers. He has taught our family what it means to cherish every day!

Last updated 8/8/2019

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Nathan

Diagnosis: Traumatic Brain Injury

Bio: Nathan was born healthy but at six weeks of age died from SIDS. By God's Grace he was revived after extensive CPR from his mother and medical professionals. Throughout the years he's come to need a wheelchair, gbutton, trach, and various other medical interventions. By God's grace we continue on each day on this adventure. We have a Facebook page- www.facebook.com/prayforNathan

Last updated 8/8/2019

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Donovan

Diagnosis: Lissencephaly

Bio: Donovan was born on 1/22/18 and diagnosed with Lissencephaly on 8/1/18. He has 3 older siblings and loves to play with them and snuggle with them. We have two dogs and one foster dog he loves to watch run around. Donovan loves lights and fans. He is the happiest little guy we've ever met!

Last updated 9/14/2019

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Nathan

Diagnosis: Cri du chat syndrome

Bio: We knew shortly after he was born that something wasn't right. He wasn't doing normal baby things like breathing and eating on his own. He was whisked away to the NICU. As the days and weeks unfolded we learned about medical abnormalities affecting his brain, spine, heart, and kidneys. At two weeks old we had the official diagnosis of Cri du chat Syndrome. We were devastated as this was not the life we were envisioning for our son. Although we face many medical complications and developmental delays, his life is not a burden, it is beautiful.

Last updated 9/20/2019

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Ayden and his brothers

Diagnosis: Brain aneurysm/hemmoragic stroke

Bio: Ayden is 16. Before his brain injury, he was an active, healthy young man lived by everyone, especially his brothers Travis (10) and Finneus (3) who adore and miss him terribly. We all look forward to when Ayden is back home and to himself.

Last updated 10/5/2019

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Harsha

Diagnosis: Tay-Sachs

Bio: Harsha was diagnosed with late-infantile Tay-Sachs disease at 18 Months. He was a bright and energetic boy that loved music and playtime. The disease has taken so much from him however he is a strong little warrior who never fails to inspire us. We live in India and are grateful to CPN for connecting us to other parents who face the same struggles as us.

Last updated 10/29/2019

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Anonymous

Diagnosis:

Bio:

Last updated 11/5/2019

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Anonymous

Diagnosis: Osteosarcoma

Bio:

Last updated 11/7/2019

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Emily

Diagnosis: Trisomy 18

Bio: Emily was born at 41 weeks and stayed just two days in the hospital. She was full trisomy 18 and full of miracles!

Last updated 12/14/2019

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Brenner-Kelley

Diagnosis: Rare congenital muscular dystrophy

Bio: Our son was born with hypotonia and a few other things that were indicators of underlying cause, but we had no real answers until over 10 years later. We now know he has a rare form of congenital muscular dystrophy. His name is Raydin. It means “Ray of life as a way of life”. And he lives up to it every day. We live in Portland, OR.

Last updated 12/6/2019