In January of 2009 we were absolutely thrilled to bits to welcome our first baby boy into the world. Arjun was born at full term; happy, healthy
and instantaneously showered our lives with an incredibly immense sense of love and purpose. As any new parents will be able to relate to, quite possibly the most significant day in both of our lives up until
Arjun passed all of the newborn examinations carried out by the midwives at birth and he continued to do so up until the age of 23 months. It was then we noticed that his ribcage had a slightly irregular presentation and that some of his milestones, such as crawling, appeared to be delayed.
We had visited our local Doctors surgery on several occasions with regards to a reoccurring dislocation in Arjun’s right arm. He would give off an inconsolable loud cry every few months, over the period of six months. We became increasingly concerned and decided to seek advice from a private health care provider to assist us with further
In February of 2011, following numerous x-rays and examinations at Sheffield Children’s Hospital, we were invited to discuss the medical findings with our private consultant. Any parent who has found themselves in this situation, waiting for news of their child’s health will relate fully to the feeling of absolute fear which sat at the bottom of our hearts on that very evening.
Of course, it was then when our journey with Arjun and pseudoachondroplasia began.
What is PSACH?
Pseudoachondroplasia (PSACH) is a short-limbed dwarfing condition characterised by disproportionate short stature and early-onset osteoarthritis. Mild and severe joint pain is common at all ages; osteoarthritis occurs in early adulthood and affects all of the joints. Scoliosis or abnormal curvature of the spine can also be a complication.
All joints exhibit extreme laxity except the elbows which may have limited extension. The joint laxity at the knees contributes to the lower
extremity deformities that include bowing (genu varum) or knock knee (genu valgum). Sometimes bowing can occur in one leg and a knock knee deformity in the other. Surgical correction is generally required but is often delayed to get the maximum sustainable correction.
Spinal abnormalities are common and include:
1) scoliosis or S-shaped spinal curve, Arjun’s spine has this presentation.
2) exaggerated lumbar lordosis, which is an abnormal inward curvature of the lower portion of the spine and kyphosis, which is abnormal front-to-back (or outward) curvature of the spine so that the spine is abnormally rounded at the top.
4) Odontoid hypoplasia causes instability in the neck region (cervical instability), which increases the risk of spinal injury. This complication often requires surgical fusion of the upper spine. Arjun has this feature of PSACH.
Pain, a common and universal complaint, begins in early childhood and can be exacerbated by exercise. Osteoarthritis in early adulthood is a universal finding usually developing into chronic joint pain. The hips, ankles, shoulder, elbows and wrists are particularly affected. Degenerative joint disease is progressive and ultimately may require surgery starting with hip replacement followed by other joint replacements. Symptomatic treatment with anti-inflammatory medications is used for pain management with varying degrees of success.
A Few Facts:
- There are 200 different diagnosed types of dwarfism.
-An estimated 700,000 in the world have some form of dwarfism.
-80% of Little People are born to average sized parents.
- Most types of dwarfism have medical complications, some more severe than others.
- Dwarfism occurs in all races and ethnicities.
- Such terms as Little People, LP, Person of short stature or Person with a form of dwarfism are all acceptable.
-Most people with dwarfism see the word “dwarf” as acceptable. Most people would rather be referred to by their name than by a label.
-In the dwarfism community, the word “average” is used instead of the word "normal."
-Dwarfism is not a reason to assume that someone is incapable. Little People can do just about anything an average sized person can, just sometimes in a different way.
-Dwarfism is not a disease that requires a “cure.” It is a genetic modification.
-Dwarfism is not an intellectual disability.
Our Chosen Charity:
Little People UK was co-founded in January 2012 by actor Warwick Davis, his wife Samantha and a group of individuals with the same goal; to offer friendship and support to people with dwarfism, their families, and friends, and help build a positive future for those individuals.
Since its inception, Little People UK has become a registered charity and an essential resource for the social, medical and financial needs of the little people community in the UK. To date it has attracted hundreds of members, along with the support of highly respected Orthopaedic, Ophthalmic, Neurological and Anaesthetic consultant surgeons together with Physiotherapists and Educational practitioners, all of whom have a special interest in helping people with dwarfism.
It is lead by a voluntary committee of 12 and one member of staff, that relies on fundraising and donations. Its committee is made up of both people with dwarfism and average height individuals, making for a very fair and compassionate group who can meet the needs of everyone, ensuring friendship and support are provided, whilst raising awareness of people with dwarfism and celebrating with great pride and positivity little people's contribution to society.
With the risk of this being the longest Just Giving Story that you may have ever come across, we would like to Thank You from the bottom of our hearts for taking the time to read and donate to a charity which really is so close to us as a family.
It is often so very easy to see a Little Person and come to the assumption that ‘they’re just little’. However, hopefully having read this you will have come to realise that there is an awful lot more that Little People have to face and conquer throughout their lives, medically, physically and emotionally. Our journey has only now just begun.
Please do take the time to visit the links below to find out more and spread the word in favour of tolerance, acceptance, empathy and understanding towards this truly amazing and extremely strong worldwide community that are, the Little People.
Thank You ever so much for your support,
Danny and Sonia Sangha