I am so proud to tell you about an article that our good friend Loren did on Deqlan.
Loren has started writing for a stunning magazine called Mamas n Papas and this specific edition thats out now, is focused on special needs. Loren wrote the most beautiful article about Deqlan, surviving cancer and now facing autism. She also shed such light on the progress Deqlan is making and how important diet and early intervention is. I was also so glad to see warning signs for cancer as well as red flags for autism listed in the article - awareness is so so key in helping children early to give the best possible outcome!
I would have love to have included the picture they used in the article, so to see it you will need to go and get yourself a copy, its to beautiful and Nanna and I stood in CNA crying yesterday, looking at Deqlans beautiful face, and the words Loren has portrayed so beautifully - here is the wording of the article, thanks you Loren and Mama's n Papa's , what a great job you are doing, what a great magazine, you have definitely found a loyal supporter in our family!
Living with Cancer & Autism
WRITTEN BY LOREN STOW, FOR MAMA'S N PAPA'S
When you first meet Sammantha and Deqlan, you will firstly notice that Deqlan is like a little tornado of energy, enthusiasm and adventure. You will then notice that Sammantha is like the eye of that little storm – serene, soft spoken and graceful, even when she’s running after her little boy to see what he’s up to. What you can’t see at first is that Deqlan, now two-and-a-half years old, is already a cancer survivor and that he is also on the Autism Spectrum.
Deqlan is Sammantha and Mark Higgins’ son, and he was a much anticipated arrival in September 2006. Sammantha took her healthy baby boy home from the hospital and celebrated as he grew and reached his milestones as any other baby. At around 9 months, Deqlan developed a bruise on his eyelid that Sammantha could not find a cause for. After a month of questions and a Paediatrician who didn’t have any answers that made any sense, Sammantha had a strong instinct that something was not right and demanded a scan to be done.
Three hours later their world changed forever. Deqlan had a malignant tumour behind his eye. The cancer had started near his adrenal gland and was now diagnosed as Stage 4 Neuroblastoma, a cancer that affects the sympathetic nervous system.
It was a time of hope and prayer and learning everything they could about this disease. Sammantha and Mark’s families and friends rallied around them as their world was turned upside down by treatment, recovery and keeping Deqlan safe from germs because his immune system was non-existent.
During this time, Sammantha and Mark reached out to others they met along the way - other families who were walking down the same road, the doctors and nurses who gave everything they had to help heal Deqlan, their Church family, supporters from around the globe, and the amazing volunteers from CHOC. To this day, Sammantha is actively involved in raising awareness and organising charity drives for CHOC.
Countless scans and x-rays, 4 surgeries, more blood and urine tests than could be counted and 11 rounds of chemotherapy later, Deqlan was announced to have No Evidence of Disease (NED) in January of 2008. Sammantha, Mark and a league of supporters celebrated – this little warrior had beaten the odds.
The trauma of the treatment that Deqlan had received and the fact that Deqlan could not socialise because of the fear of germs meant that he fell behind in his development. Sammantha and Mark expected this, but Sammantha’s mother-instinct whispered to her again. Deqlan had stopped talking, was not making eye contact, did not respond to his name being called, and various other ‘red flags’ niggled at Sammantha’s consciousness.
A paediatric neurologist shared Sammantha’s concerns, but they decided to give Deqlan some much needed ‘catch-up’ time in development. However, in Ocotober 2008, when Deqlan went for his follow-up appointment, the diagnosis was confirmed. Delqlan was on the Autism Spectrum.
Autism, a complex and usually devastating disability, is the most common of all childhood neurological disorders. It affects approximately 1 in 158 children under 6 years old and is 4 times more common in boys than girls. Because there are many different types and severities experienced, there is an Autism Spectrum from mild to moderate to severely affected individuals.
The most common symptoms of people living with Autism can be all or a combination of a complete or partial lack of communication; the inability to understand the complexity of social relationships; and the display of rigid thought patterns and behaviours. These can all lead to the person with Autism becoming isolated from the world around them, which is what is so devastating about this condition.
According the Autism South Africa’s website “It is a lifelong condition and there is no cure, but with the appropriate intervention, it is possible to guide each individual towards their full potential in life.” In the Autism community, they talk of bringing the person ‘through the window’, and this is possible.
A second life-changing diagnosis would surely be devastating for this young family, but no, this was not the case.
When asked how they coped with another diagnosis so soon after Deqlan beat cancer, Sammantha replied that after the possibility of losing her son to cancer, nothing could shake them. They had gone through an ordeal and beaten odds that were stacked very much against them and they had not only survived, but had learned to thrive – this new diagnosis would not stop them in their tracks.
Sammantha and Mark started anew, learning as much as they could about Autism and how they could help their son. Often people wonder where they get their energy and determination from, but their positive outlook is fuelled by a simple, solid love that they for their child.
Talking and getting support from other families with children on the Autism Spectrum has also been a huge motivating factor for Sammantha. As with any diagnosis, to get to know other people walking the same road is a blessing. They can share real life inspiration and even ideas that don’t come from the medical professionals they deal with.
After much research, they decided to take Deqlan to a DAN (defeat autism now) Doctor and start treating his autism on a Biochemical level. A dramatic change in Deqlan’s diet, removing many components such as sugar, wheat, gluten, casein, soya and yeast has made an amazing difference. Deqlan has started talking again, his new favourite word is ‘Mark’. He is also making eye contact and interacting.
Since starting this diet, Sammantha says the light has ‘come on’ in her son’s eyes. Just when you are sure that Deqlan has not noticed you are there, he will walk up to you, almost on his tippy-toes, and ever-so-gently take your hand. He wants you to follow him, to show you something that he’s found or seen. He may not have as many words as another toddler, but you cannot doubt that he is communicating with you.
Talking with Sammantha about her son and her love for him reminds me of most mothers to children with special needs. There is love and joy and achievement and dreams – as with any ‘typical’ child. Society often places in our hearts a fear of not being ‘perfect’, but mothers like Sammantha understand that perfection is subjective. What is more perfect than a son who brings joy and life and love and learning? Children with special needs are able to show us, if we stop and take notice, that anything is possible and that there is beauty in the smallest glance, lightest touch, and tightest hug.
In closing, Sammantha reflects on Deqlan and is grateful for the journey on which he has brought everyone in his life.
“Deqlan is the light and love of our lives and we thank God each day for blessing us with the most incredible gift in him. We feel the challenges that Deqlan has been through has taught us so many lessons, and we continue to learn from him each day. We treasure every moment with our precious boy, every touch, every smile. We hold onto every hug, every giggle, every attempted word and every word Deqlan has mastered. Even though Deqlan can’t say ‘I love you’ yet, we just know he does. It is obvious in the way he looks at us and the way he kisses us that he loves us too. I can’t wait to wake up in the morning and to go through the day with Deqlan, discovering all the new things he has learnt – we are amazed and so proud of Deqlan’s spirit, which is to keep on keeping on with everything he tries each day. Today it’s ‘ba’, tomorrow its ball! We have learnt not to sweat the small stuff, to appreciate each moment with everyone and to trust Our Lord and to thank Him for all He is doing for us and for our beautiful Deqlan Ross. We love him more and more each day and we are so proud of him!”
Two potentially devastating diagnosis’s in as many years has brought this family closer to their faith, strengthened their resolve and taught them Life’s most precious lesson – to love and live fully in every moment of every day, thankful for the gifts that are right in front of them enabling them to grab and hold onto life with both hands.
Warning signs for Cancer (from the CHOC website www.choc.org.za):
S – Seek: medical help early for persistent symptoms
I – Eye: white spots in the eye, new squint, blindness or bulging eye.
L – Lump: in the abdomen and pelvis, head and neck, limbs, testes, glands.
U – Unexplained: fever, loss of weight and appetite, pallor, fatigue, easy bruising or bleeding.
A – Aching: bones, joints, back or easy fractures.
N – Neurological: change in behaviour, balance, gait and milestones, headaches, enlarging head.
Red Flags for Autism (from www.autismweb.com)
“According to the National Institute of Child Health and Human Development's Autism Facts, a doctor should definitely and immediately evaluate a child for autism if he or she”:
Does not babble or coo by 12 months of age
Does not gesture (point, wave, grasp, etc.) by 12 months of age
Does not say single words by 16 months of age
Does not say two-word phrases on his or her own (rather than just repeating what someone says to him or her) by 24 months of age
Has any loss of any language or social skill at any age.
I was also so touched to see an article on leukimia - and its possible that every edition is going to feature on article on specific types of cancers - how wonderful for awareness and hopefully funds which will lead to cures!
Also in this months edition, is the most beautiful article on Loren's son Kai and how their family is soaring and not letting Kai's diagnosis of Down syndrome get in the way of who is is as a beautiful and gentle little soul, who is already achieving so much , also due to early intervention and pure love and hope from his amazing parents.
So for all our South African friends, go out and get your copy now, i promise its worth the read!
I love Lorens explanation of the Special Needs edition:
A fledgling magazine, it is unashamedly proudly South African, while still being glossy and filled with interesting articles (I should know... I’ve contributed 6 articles to this month’s edition... LOL!)
But most importantly, this magazine has bravely chosen to ‘go where none has (sincerely) gone before’... publishing stories, facts, articles and information on children with special needs. Of course not all special needs could be covered (because we’d need more than a single magazine for that), but they’ve made a start and from the next edition, special needs will be featured Every. Single. Month.
Being a mom to a kiddo blessed with an extra chromosome, this fills me with hope and dreams that we can get our message out there – special needs are not bad, or ugly, or horrible, or scary. Our children bring us so much joy, love and satisfaction. More importantly, they themselves accomplish, learn, grow and feel tremendous pride in their own achievements!
I am so excited that there is finally a ‘voice’ for that part of our population that has thus far been ignored by other mainstream publications.
Anyhoo – a quick note turned into an essay!
Buy a copy – oh hell, go buy two copies and give one to someone you think may need a lift! Tell your friends, family and colleagues. And don’t forget to write many letters to the editor, telling her just how wonderful it is to be witness to the ‘not so perfect’ perfection of life. Support this magazine’s initiative to educate the public about special needs - a child’s life may be changed, made better, or even saved if the message gets out there regularly and with honesty and love.
GO LOREN, WE ARE SO VERY PROUD OF YOU !!!!!!