A mum was left terrified for her child after he was born without arms.
Lindi Martin, 40, gave birth to her son Hutt McGuire Martin last year, with husband Shane Martin, 48, by her side.
The parents were overjoyed to welcome their tot but were shocked to find out that their child’s arm bones had not developed as normal.
Hutt was diagnosed with thrombocytopenia absent radius syndrome (TAR) – an extremely rare condition that only affects one in 250,000 children.
It affects the bone marrow, which is unable to produce platelets and causes blood to clot, it can also affect the limb growth – for Hutt, this means he has no arm bone at all, with his hands at his shoulders.
“Finding out our baby was medically complex was terrifying,” Lindi, a stay-at-home mum from Denver, Colorado, told http://NeedToKnow.co.uk
“Because it’s not widely known, no one really knew what to expect and it took around five months of testing before we got the official diagnosis.
“But we knew we would love this baby and give him everything we could to give him a happy, successful life.”
Sometimes children with TAR have heart and kidney issues, which would require heart surgery, but thankfully Hutt’s organs have been unaffected.
But he also has bilateral club feet, which surgeons are in the process of correcting, as well as a milk protein and soy allergy, which can cause gastrointestinal bleeds.
The devastated parents, who have three other children, have also found out that the condition is genetic.
This has left Lindi feeling “guilty” and as if her “body betrayed him”.
She said: “We were told by doctors that the condition is caused by my husband and I both missing a tiny piece of a certain chromosome of ours.
“If only one of us were missing the piece, he would not have this syndrome.
“We had three children before Hutt, and until then, neither of us knew about this.
“Life isn’t easy but knowing he will deal with this for life, just breaks my heart as his mum.
“Hutt can’t feed himself yet or crawl like a typical baby, he will never clap like babies do or play baseball with my husband.
“I feel so guilty because I’m the reason he has the condition, these struggles, this difficult life.
“Deep down, I will always feel guilt, because I feel like my body betrayed him.
“But on the other hand, when he does learn to do something, that’s taken him so much work to learn, it is so very extra sweet and amazing.
“He works so hard in his weekly therapies to learn to adapt.”
Aside from dealing with the worry around operations and his physical future, Lindi is also heartbroken by how other people treat her child – with the family suffering constant stares.
She said: “There are amazing supportive people in the world, but this world is also so cruel.
“Knowing he will probably be talked about, made fun of and picked on his whole life – it crushes me.
“Mean comments are something we will always deal with.
“It really just depends on the comment with how I react.
“Sometimes, I just ignore them, other times I will respond but I try to do so in a mature and kind way.
“I more so try to educate and respond with how amazing he is and that his disability doesn’t define him.
“I will always feel extra protective of Hutt – but he will always know that he is so strong, amazing, resilient and determined and way beyond loved.”
Hutt’s parents are determined to give him all the tools, resources and help he needs to live an as normal life as possible.
Lindi said: “We want him to be happy and know that he can do anything he sets his mind to, and we will help guide him to make any of his dreams come true.
“I know Hutt has the greatest purpose in life – I don’t know exactly what that purpose is but I know he was meant to do incredible things in life and no matter what, we are so unbelievably proud of him.
“I want other parents to know just how strong and brave they [children with TAR] are.
“Just because someone has a disability, doesn’t mean it defines them.”
“We are our child’s biggest advocate so don’t be afraid to stand up or push for something you believe when it comes to medical care.
“Hutt is so loved and such a blessing to our family.”
